Dancing Dark Circles

Sorry that I haven't posted any "Nick News" lately. So here goes...Nick & I went down to JHH on Friday for his LP #4 - Nick did great. He really hates this procedure, but alas, there is nothing we can do about them, he has to have them. Good news, Nick's spinal fluid is currently clear of leukemia cells!

Nick's counts have been steadily improving, although, the platelet count has drifted down slightly, so he may need a platelet tx. next time he goes down, which will be on July 3rd due to the holiday on July 4th.

The "formal" donor search has been started. Twenty-seven preliminary matches have been found. This did not seem like a lot to me, however, this is considered to by a high number of potential candidates. Now those people will be called and they will start to come in to have their blood drawn to take the matching to the next level. We are hoping for a 10 out of 10 match! This process can take anywhere from 4-8 weeks, before Nick would actually be getting the BMT. So there is no way of know when we will get the call for Nick to come in for his pre-testing and then his pre-BMT regimine.

I still feel like I am in a bad dream. My mind is always racing and I don't feel like I can get on top of anything right now. I survive day-to-day. I guess I appear on the outside to be doing OK. But, I feel like my life is in a free fall and my parachute is not opening. The days are going by so fast. I need everything to STOP so I can catch my breath. I talk until I can't talk anymore, I fight with everyone about anything. I am driving everyone in my family crazy.

The initial SHOCK of the diagnosis is over now...oh yeah....Nick has leukemia. Yawn...ho hum.
There is too much information to process and not enough time to make sense of it all. I need a personal assistant, a maid, a cook, a chauffeur and someone to put my freakin' file cabinet together; because by God, I have a lot of filing to do (this is long story involving my husband)!

Is this hell's waiting room? Take a number and wait your turn. Shhh...sit quietly. Read the rules on the wall. "Don't make any noise, don't be mean, don't be rude, don't ask so many questions, don't worry, don't cry, don't wonder why, don't jump up and down on the furniture screaming expletives because none of this makes any sense."

I am losing things. I left my keys in the door of my car on the parking lot of the grocery story. I drove the wrong way on an exit out of the drug store. What the hell is wrong with me? This is how soldier's in Iraq get killed. They get some bad news from home and they can't be there and they are trapped in this horrible place doing horrible things and their mind wanders and then, bad sh*t happens! Sara says I have dark circle under my eyes. I am dancing dark circles through the darkness with dark thoughts circling in my head.

“I would hurl words into this darkness and wait for an echo, and if an echo sounded, no matter how faintly, I would send other words to tell, to march, to fight, to create a sense of hunger for life that gnaws in us all.” ~Richard Wright

Cease & Desist

Yesterday, someone decided it was a good idea to shut down Lt. G's blog. My anger has been officially redirected. Clinic nurse off the hook, U.S. Army you're up... Lt. G was told he was to stop posting on his blog effective immediately. I have already composed a letter and started sending it to various Senators and Congressman throughout the country. Here is an excerpt from my letter...

"I am a regular reader of milblogs and I have gained knowledge about the war and the workings of the military (both good and bad) through the writings of those who are "boots on the ground." These are stories one will never see, read or hear from mainstream US media. I do support our soldiers and I am not anti-military. I am anti-censorship when it comes to violating the very rights for which our soldiers have been fighting and dying for the last five years! I know that there are security concerns and OPSEC issues that have to be considered. Lt. G is aware of those rules as well. The last thing he would ever do would be to intentionally endanger the lives that he has been entrusted to protect!

I want this soldier's blog to be reinstated and this "gag" order taken off of this soldier and his blog. Here is the link to Lt. G's blog - kaboomwarjournal.blogspot.com I refuse to sit idly by and watch the rights of our soldiers be violated. As they defend the rights and freedoms of others, who will defend them?"

Gravity

In writing a comment in response to Lt. G's blog (he is a soldier in Iraq) and his bog is listed below (Kaboom), I found this quote by the Swiss philosopher and poet, Henri Frederic Amiel. I sent this to Lt. G on May 23rd. Nick went into the hospital on May 28th. Why does that seem like it was so long ago, and yet, it has only been one month?

"Oh, do not let us wait to be just or pitiful or demonstrative toward those we love until they or we are struck down by illness or threatened with death! Life is short and we have never too much time for gladdening the hearts of those who are traveling the dark journey with us. Oh, be swift to love, make haste to be kind!" ~Amiel

"Irony is jesting behind hidden gravity." ~John Weiss

Haiku

Fallen sick on a journey,
In dreams I run wildly
Over a withered moor.


~Matsuo Basho

Waiting To Exhale

Wish I was here. Wish I was anywhere but this reality right now. I am emotionally exhausted and overwhelmed with thoughts that are too numerous and annoying to post. I am scattered and cannot focus. My mind races faster than my body can follow. I never liked Alice In Wonderland and I hate this bleepin' rabbit hole.

The standard post-show "let down" is in full force. So much work and it is all over in the blink of an eye. The dancers were great, but, once the show is over they all pack up and disappear for the summer. Only the few, the proud, the Marines remain to clean up all the mess, pack up the cars and drive the long, windy roads back to the studio, where everything is off-loaded into the lobby. There it will sit until it can be sorted, organized, and re-packed, ready to be transported once again back into storage. I don't feel like doing any of it...I actually don't feel like doing anything. I feel like I am under water and I cannot hold my breath much longer.

I have spent the last two days making small dents in the the chaos that is my house, catching up on studio paperwork and trying to wrap my head around that fact that my son is permanently ensconced on the sofa in the living room. Usually Nick would be at work and running the roads with Kate, full of life and energy; going to concerts, or Fell's Point, or an Oriole's game...putting in an appearance at home just frequently enough to ease my mind that he was alive and well. Now all that has changed. The hours of each day sneak past, so quickly and quietly, they don't make a sound. I want to stop the clock and say, "Hey that's not fair...we couldn't enjoy that last hour...we want a redo!" We are each mired in our own brand of quicksand, unable to extricate ourselves from that which saps our strength and steals moments we will never get back.

Nick has been sick with a nasty cough and cold, which is taking what little energy he has to power his lanky frame. His appetite has been fair, as we at least have the nausea monster under control for the moment. He continues with a headache (no one can figure out why he has this headache, although I feel it is related to the spinal taps) that is worsened with every cough. The "fever" monster continues to be held at bay also! It is unfortunate that Nick cannot be enjoying these days more. Due to his headache and now this cough/cold, he has not really been feeling up to doing much of anything. I know this is so hard for him...and I am not sure what I can do to make it better. We did get to see a rainbow this evening after a brief rainstorm. I was going to take him out to the park for a while, but, we got rained out. We watched a couple movies and just hung out. Of course, it is nice to have Nick here while I putter about and do my work, but, I know this is not the way things should be. I just want him to be well again. I just want to know why he has to go through this? I just want to know why this is the mysterious way in which God works? I don't like mysterious...I want answers. Who is being tested and why??? I don't like tests either.

We are off to Hopkins tomorrow, hopefully, for just a brief visit, although we have all learned to keep an open mind on clinic days. We hope they will be cutting him down to one time/week visits, if all is good tomorrow. Nick continues with the spinal taps on Fridays. He still has to get three more and Nick is counting down! There is no news on the transplant front. Everything I read adds things to my list of things to do and to ask. I feel like I am in a pressure cooker and I wonder when the lid is going to blow?

I have been reading some information about other transplant centers, specifically, the one in Seattle that does A LOT more transplants than Hopkins. Being in Seattle is not without it's complications, but, if Nick is going to have to go through this process, I want him to have the best chance for a positive outcome. This does not mean that Seattle would be better for Nick, but, I hope to talk to them and find out. I have mentioned this to Nick and I am waiting to see if he wants to pursue looking into this, the other huge factor is his insurance coverage and the expense of travel, lodging, and the work issues! More things to think about...the list grows!

I was listening to sports talk and they were talking about the Cubs and how long it has been since they have won. The Cubs are doing great right now, but, apparently they always choke in the clutch. The fans have been "holding their breath" hoping that this season will be the real deal. The sportscaster said, "They (the fans) won't believe this until it actually happens. They have been holding their breath for four months now." They will continue to do so until the final pitch of the final inning has been thrown and the win is in the books. That is a long time to hold one's breath! Thus, the waiting to exhale! I guess what I am trying to say is I think I can identify with the Cubs fans right now, just on a whole 'nother level! Anyway, I can't think about it anymore tonight...my heart hurts!

The Show Must Go On

Who could resist that face? This is one of my little dancers at last year's show. By the end of this weekend, Dancin' 2008 will be in the books. The dancers are ready to do their thing and I am looking forward to watching them as they spread their dancer wings and fly!

It brings me joy to see all the hours of lessons, preparation and rehearsal finally come together . From the smallest little ballerina who is taking her first steps onto the stage to the teens who are finally beginning to put together the technical execution with the artistry of a performance, these two nights are what we work towards all year. To all of our DDC dancers, "Break a leg!" You guys really rock my socks!

"They Who Dance"

The feet of dancers
Shine with laughter,
Their hearts are vibrant as bells;

The air flows by them
Divided, like water
Before a gleaming ship.

Triumphantly their bodies sing,
Their eyes
Are blind with music.

They move through threatening ghosts,
Feeling them as cool as mist
Against their brows.

They who dance
Find infinite golden floors
Beneath their feet.

-Marjorie Allen Seiffert

With Hope

I know some of you know that I have adopted several soldiers through the AdoptA-Platoon organization. I have also really gotten into reading milblogs, which are blogs written by military, usually soldiers who are deployed in Iraq or Afghanistan. Anyway, one of those soldiers, is finally home now. He just recently posted about some of the stuff that has been going on since he got home and it sounds like he has been going through a rough patch. There are so many people who have been loyal readers of his blog, they have all come to know him and want the best for him. I like to consider myself one of those people. It is strange and at the same time comforting to know that even perfect strangers can get to know one another and more importantly, reach out to one another in their time of need. A lot of people responded to this soldier's post to let him know that he was not alone and there were so many of us out here in the blogosphere that cared about him. One comment in particular really struck a chord for me so I wanted to post it here. Also, if anyone wants to read some of my favorite milblogs just check out the links to their blogs I have posted on mine! The commenter posted this excerpt from Maya Angelou's poem, "The Rock Cries Out To Us" followed by the writer's own words which I thought were just beautiful.

History, despite its wrenching pain,
Cannot be unlived, and if faced with courage,
Need not be lived again.
Lift up your eyes upon
The day breaking for you.
Give birth again
To the dream.
Women, children, men,
Take it into the palms of your hands.
Mold it into the shape of your most
Private need. Sculpt it into
The image of your most public self.
Lift up your hearts.
Each new hour holds new chances
For new beginnings.
Do not be wedded forever
To fear, yoked eternally
To brutishness.
The horizon leans forward,
Offering you space to place new steps of change.
Here, on the pulse of this fine day
You may have the courage
To look up and out upon me,
The rock, the river, the tree, your country.
No less to Midas than the mendicant.
No less to you now than the mastodon then.
Here on the pulse of this new day
You may have the grace to look up and out
And into your sister's eyes,
Into your brother's face, your country
And say simply
Very simply
With hope
Good morning.

Maya Angelou

Ryan, friends know the song in your heart, and we'll sing it back to you when you've forgotten the words - listen....can you hear us? We care.

Baseball & Moonlight

Another day of tech week in the books. I drive home on dark, windy roads, the full moon watches me as I wearily find my way home.
I call home to say I am on my way and check on Nick.

For some reason, when I call home, Glenn answers the phone..."Diamond Dance Center can I help you?"

"It's me...I am on my way home. How's Nick?"
"Oh...he's at the baseball game."

Oh yeah...that is such a weird and wonderful feeling at the same time. Nick is off at the baseball game. I guess he must be feeling a lot better. I come home to my hubby who has been working on a chore list as long as my arm. He fixes me dinner and I find it very strange that Nick is not home. Then I start to wonder...did he take a jacket? It is so cool out tonight...he will catch pneumonia. The game is on the television and Glenn & I joke about seeing Nick in the crowd. (This is a regular thing we do for some odd reason) Anyway, not too long after the game is over, Nick and Kate arrive home. They only stayed about four innings...but, Nick seems happy to have gotten some time out of the house, spend some time with Kate, and he finally got to go to a game.

His day at John's Hopkins was positive. His counts were good and he did not need any transfusions today. He got some new anti-nausea and anti-vomiting meds. They gave him an IV in order to give him some fluids (Nick's choice) hoping to make him feel better as dehydration can also make one nauseous. Unfortunately, he lost four pounds! I am not surprised as he has been unable to eat or really drink much since Friday. Nick was bummed about that as he is trying to put on weight in preparation for his BMT. No news of any kind on that front.

Nick's hair has decided it can no longer withstand the dastardly effects of the Gleevac. It has decided to pack it's bags and head for greener pastures, like the couch, the chair, the pillow, Nick's shirts, the tub and anywhere else it can find to take up new residence. Nick is thinking about shaving it down to a #1, but, I am not sure how that will work, so we will see. We are hoping for a brighter day tomorrow and we have a plan in place to beat back the waves of nausea and hold the emesis at bay. If things are not better by Friday, the nurse said they will have to make a new plan, whatever that means. Until then, we hope to spend a couple of peaceful days and nights enjoying the time together in the cool of the evening and maybe do some dancing in the moonlight.

Life Is A Blur

Sometimes life is a blur...like a merry-go-round spinning wildly out of control. Today went by so fast. I slept too late and awakened from a bad dream that made me cry and made me mad and made me say curse words and take the Lord's name in vain at the same time.

Nick is still feeling under the weather. He started off the morning getting sick again...but, managed to go the rest of the day without further incident. Glenn and Kate were on duty as I was off to Kennard Dale for Day #2 of tech week. Nick will be off to clinic tomorrow for his regular appointment. We did get a call from the nurse who told him he would not be getting the LP and chemo tomorrow. I was relieved to hear that, but, Kate told me it was because the test on the spinal fluid was not done yet; so, not to get too excited. Kate will be taking Nick tomorrow and I hope to be sending a list of concerns and questions to make sure that this Friday will not be a repeat of last week.

Tonight, I wanted to point out some of the positive things that have happened in the past few days...you know that is not my forte, so I guess I will just have to practice a lot more.

We got a call today from a lovely lady named Cynthia who is a registered nurse from the Outreach Program with Guardian (Nick's insurance company). She was calling to check on Nick and "see how he was doing." She was very nice and she gave us a lot of information and websites to check, a 24-hour nurse hot line that we can call anytime for questions or help, and so much more.

We got in touch with Nick's insurance customer service department and Nick got Aunt Elaine and myself on the list of people who can call to take care of the financial part of all this. Aunt Elaine has agreed to run interference for us on all this and that will be such a big help.

So many of the families at DDC have been so kind in offering their help and support. So far, tech week has been going well and I am looking forward to having a wonderful week leading up to the performances this coming weekend.

We have received cards and notes from so many and today, I received another card from Lt. K, just letting me know that SHE was thinking of ME!! It definitely made me smile. 1st Lt. K is an RN I have adopted who is currently serving in Iraq with the 86th Combat Support Hospital. She has been in the Army for twelve years. She has three young children at home that she is missing while she is away on this deployment. I had just begun writing her and sending her care packages when Nick was hospitalized. I wrote her briefly to explain why I might be a little off in sending her stuff for a while...she wrote me back and she was so supportive and nice. She has sent me several hand written cards since, which amazes me, as I know how busy she is and the stress that she is under. Her job over there is so demanding, both physically and emotionally. I truly admire all the medical personnel that are serving in Iraq and I plan to continue my support as best as I can. She will not be coming home until February of 2009! I have requested help from our DDC families and I know they will come through with donations that will help Lt. K and all of her patients and staff.

I also got an email today from another soldier who has just recently returned from a 15-month deployment in Iraq. His blog was what inspired me to start my own blog, which of course, no one was reading or really knew about until recently. His blog was so good. What I liked about his blog was that he really told it like it was for him there in Iraq; the daily grind of what he was experiencing as a soldier, the good, the bad, and the ugly! He is back in the states now and I had emailed him to see how he was doing...I didn't expect to hear back so quick, but, today I did. I am happy to report, he is doing OK. He went to Iraq in March of 2007 and I am just really glad he is finally home!

Well, I guess that is all I for now. When I know more, I will let everyone know. Keep the prayers and good vibes coming our way. Those that are calling or emailing Nick, please continue as he enjoys reading his emails and hearing from his friends and family seems to be keeping his spirits up as much as can be expected. Today he said he would rather have the headache than the nausea and vomiting, which I fully understand. But, it made me sad, because I don't want him to have any kind of pain! He had been doing so well with his appetite and his eating and that has been shot to hell the last couple days. I am hoping the medications can be adjusted so he can get more relief when he does take them. It is late and I must go get some sleep.

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!

Fly By The Seat of Your Pants

Hey, I've been looking for a good reason to put a picture of this pilot on my blog...and since I was told today that I had to learn to "fly by the seat of my pants," well, when opportunity knocks, I'm gonna answer! This is Lt. E and he is a Navy pilot with Strike Fighter Squadron 32! Sign me up for lessons today.

Today has been a loooooonnnnnnggggg day and it is still not over. It is midnight and Nick has been yaking for hours now. Kate, Barry and I have been keeping watch and emptying throw-up pans. Nick looks like hell and hasn't been able to keep anything down, not even his anti-nausea medicines. I decided it was time to call the doctor, and thank God she called right back. She is going to call in a prescription for a new anti-nausea medicine that will dissolve under his tongue. This is when being a night owl is a good thing, except we have all been up since way too early this morning. I was seriously thinking about getting in bed soon...but, I guess I will be driving to WalGreens to pick up some drugs. If this does not help and Nick keeps puking, he will have to go into the clinic tonight for rehydration and IV anti-emetics! Never a dull moment. I will have to save the rest of today's story for later. For now, I hope to get Nick settled so we can all go to bed. In the meanwhile, enjoy Lt. E...batten down the hatches and clear the flight deck!

Fragile As A Flower

Sorry for the late post on today's happenings, it has been a busy day. Nick was off this morning with Kate to John's Hopkins. He had his labs drawn and then he went to the clinic. There they met the clinic nurse, Maria, who will be his regular nurse for all things outpatient clinic. While his numbers were actually not bad, unfortunately, Nick was told he would have to return to the clinic on Friday for another lumbar puncture and more intrathecal chemo.

I was not happy about this news on many levels, not the least of which was the fact that Nick and Kate got up early (loss of precious sleep and recovery time), drove all the way down there (waste of gas and parking $), labs have to be redrawn again on Friday (being charged for Thursday labs which he did not need), and once again, the decision-making that is happening with no regard for the patient or his family (feeling of powerlessness and total loss of any control over the situation).

Not to mention, the "hard-to-hear news" from the nurse in the clinic that your CSF (cerebrospinal fluid) has been invaded by the evil leukemia cells; therefore, sending everyone to the bottom of the emotional roller coaster faster than kids running to the buses on the last day of school! I know Nick was upset, yet, trying hard to be brave. It is so hard each time you hear a little piece of news like this...it underscores the frailty of the human form and reminds us of the tenuous hold we have on life. As you get older, this kind of thinking comes to the forefront of your brain matter on a more regular basis. It doesn't make it any easier to accept, but, it is just there, like a cat or a gorilla sitting on your chest. You may not like it, but, you get used to it. For those in the prime of their lives (what is the prime of one's life?) like Nick, you don't expect the vice grip of mortality to hold you in it's clutches and never let you go.

Nick was doing better as the day went on...Aunt Elaine is in town and she stopped by the house to visit with Uncle Dan and Aunt Cathy. At times, things seem so normal and then a big fat reminder will jump up and hit you between the eyes with a 2 x 4! I am not sure how we are all supposed to rebound from that and I know that the tough times are yet to come.

So tomorrow, Aunt Elaine and I will be riding shotgun and Kate will bring up the rear. Nick always travels with an entourage...he is well loved and time together is to be treasured from now until always and forever.

"I still find each day too short for all the thoughts I want to think, all the walks I want to take, all the books I want to read and all the friends I want to see." ~John Burroughs

"I held a moment in my hand, brilliant as a star, fragile as a flower, a tiny sliver of one hour. I dripped it carelessly, Ah! I didn't know, I held opportunity." ~Hazel Lee

Just Hangin' Out

Ok...doesn't that look just like Nick when he was a baby? Anyhoo...all has been quiet here on the home front. Nick has been resting, trying to eat a lot, relaxing and trying to stay out of harm's way.
He has another clinic visit tomorrow. He will have to go at least 2x/week to get blood drawn and receive transfusions as needed. Nick tells me he is scheduled to actually see a doctor next week, so I hope to be able to get more information at that time. I don't expect to hear anything about the matching for a little bit. Of course, when I do hear anything I will be sure to post. Nick is getting a little antsy, he wants to go to a baseball game and his friends just arrived in Tennessee for Bonnaroo; so he is a little bummed about not being able to be there.

Sara wanted me to add that they are all sitting in the living room "sulking" because (in my words) their hippie-selves are not in the land of pleasant living, drinking wine from bags, running barefoot through the dusty fields with flowers in their hair and funk in their armpits. Oh yeah, and listening to the good music.

Returning to the studio has been a mixed bag. It is good to be back to see all my dancers and my DDC family. I have been doing my best to catch up with the help of my DDC "Sarah's!" They have been a great help with all the office work that needs to be done. It seems like running a dance studio wouldn't involve that much work, but, it always amazes me all the stuff that needs to get done. Right now, I find that when I am not home I am unsettled and worried, even though I know I shouldn't. I am a worrier, not good at doing all those cliche things they tell you, like "cross that bridge when you come to it" and "take one day at a time." All things considered, I am chill right now. I try not to think too much or too far ahead. I am enjoying this brief respite, and having Nick home is so great. So I guess in closing, I will leave some good quotes on "worry." I need to put them on a paper and read them whenever I feel the urge to stress.

“Every evening I turn my worries over to God. He's going to be up all night anyway.”

"Worry is like a rocking chair--it gives you something to do but it doesn't get you anywhere.”

“Worry often gives a small thing a big shadow.”

Take A Number

Today's trip to the hospital was a real pisser...and I mean literally, it took us over an hour and fifty minutes to get to JHH outpatient clinic due to an accident on I95. What should have been a 30-minute trip turned into and hour and fifty-minute journey. Upon arrival the blood drawing area and the heme-oncology waiting areas were packed with people! It reminded Nick of going to the MVA, where all you do is "take a number," have a seat and "hurry up and wait." Upon arrival, our first trip was to the almighty admitting area to get Nick and Sara their "orange cards." The orange cards track your travel through the maze of clinics and labs, making sure that you are billed for the pleasure. After the orange cards were secured, Nick and Sara scanned their bar codes and joined the sea of humanity that was waiting to have labs drawn. Nick continues to have headaches, so he was taken back so he could lie down. Fortunately, they both had labs drawn in a reasonable amount of time and we were told we were done in this area, so we should mosey on up to the second floor and wait for the results. "Don't forget to swipe out before you leave. Thank you for flying Southwest airlines...you are free to fly about the country!"

The outpatient area was also crowded with patients, so we swiped in again and then headed off to look for food and drink. Upon our return, Nick was taken back to a new area, set-up with chairs, window beds and stretchers. Nick was lying on the stretcher with his long legs hanging off the end and a big hole in his sock. The nurse came in with the results. Nick's WBC is even lower today and his ANC (absolute neutrophil count) is only 44! It is not unexpected that these counts keep falling, it just means he is still at high risk for infection. His platlets were also a little low, so he received two units of platelets via peripheral IV, since he doesn't have any other way to get the stuff right now.

Sara & I came home, while Nick and Kate stayed and finished the transfusion. I then proceeded to get ready to go to the studio. Sara was lucky enough to catch a nap. I am very tired tonight, so I must go to bed. Nick's next appointment is on Thursday. We did not speak to anyone about the plans for BMT, how and when we will find out if Sara is a match and what will happen if she is not. There is only a one in four chance that she will be a match.

Nick had a good day, he did a lot more than normal so, he was resting on the couch by the time I got home from dance last night. He had a few friends over in the evening and Kate also spent some time with Nick here at the house. I am happy that he will be home for the next two days, so he can rest. His next appointment is this Thursday. So I guess no news is good news. I will keep everyone posted as I am able. Thank you and good night.

It's A Sunshine Day

Just thought I would post a quick update. Sunday was a good day here at the ol' homestead.
Nick was in good spirits and the weekend at home has been without incident. Nick got some much needed sleep. He is getting fed around the clock, as we are trying to put some poundage back on his lanky frame. There were just enough visitors to keep Nick from losing his marbles being cooped up here with Mom and Dad all day. His headache (from the lumbar puncture) seems to be lessening and I hope it will be gone soon. He has tried to stay flat most of the weekend which will help the area at issue heal. Best of all, he has remained without fever or any of the other dreaded symptoms that require us to call the doctor. Today was a good day for Glenn & I too. Glenn was in his glory creating a variety of different foodstuffs for Nick and guests. I was happy to have a day to catch up on studio work and organize a few of the "piles" into some semblance of order. If I could only have one more day, I might even get caught up!

We must all be up way too early on Monday, in order to head down to JHH for Nick's first outpatient appointment. He will have bloods drawn and labs evaluated. During his clinic appointments, he will get transfused if needed and the all important "counts" will be reviewed. The hope is that we will see the return of good WBC's (so he can fight infection better than right now) and that the bad PH+ (Philadelphia chromosome) numbers will be going down as his medicine kicks into gear. Sara will be getting tested or starting the process to see if she is a match for Nick's BMT.

I will be back in the studio this week for my last week of classes before rehearsals begin. Nick will continue to chill at home and he is looking forward to seeing his friend Barry and his Aunt Elaine who are both flying into Baltimore this week. We are all still getting used to the mandatory feeling of "germaphobia" and I hope someday my hands will stop smelling like bleach. Gotta got to bed now...I am not a morning person so I need to hit the hay. I will post an update on our journey to the clinic when I get home from dance tonight. Peace.

Gone Fishin' - Part Two

Nick is home! Of course, it took us longer than expected to actually get out of the hospital, doesn't it always! Kate & I both arrived a little early to make sure we didn't miss any important visits, but, the only people we saw were the nurses and the techs (who are actually some of the most important people you meet in the hospital.) The doctors decided to "top off his tank" before he got his line pulled, so Nick received two units of blood and some platelets before they took his IV out. Then he was free for the first time in nine days. Nick took a shower as Kate & I packed up the rest of his gear and we prepared to jettison out of this "hidey hole" from hell. It was great to see Nick in his shorts and a t-shirt; and it was even better to walk him out of the hospital. Kate drove Nick to a pizza place so Nick could bring home some pizza for lunch. It is great to have Nick back in his own bed and he must think so too, as he has been sleeping for hours. He is still bothered by a "spinal" headache from the lumbar puncture that they did; the headache bothers him whenever he sits up for any length of time, so I hope it goes away soon as it will hamper his activity.

Now that Nick is home, it is important to emphasize that he is still in a critical state and he is extremely immunocompromised! Nick's biggest potential complication right now is INFECTION. His immune system is completely shut down and his body cannot defend itself from any kind of germs. He may not have any visitors who are sick in any way. He cannot be around any children under age 12 or children who hang in daycares due to the increased germiness of kids in general. His general strength may build up somewhat over time, however, that is yet to be seen. Even though he is home, everyone should still consider him to be very seriously ill, in terms of what he can do and with whom he can do it.

Please be sure to ask regarding food and activities. While he is encouraged to be as normal as possible, there are significant caveats that come with anything he does for the next four weeks. For example, he cannot be out in the sun for any length of time due to the chemo and some of his meds. What he can eat is a huge issue in terms of making sure he does not get any food-borne illness. He cannot garden or touch outside dirt . He cannot swim. He cannot put worms on a fish hook or touch fish. He can only shave with an electric razor. He needs to be extremely careful when he uses knives or scissors, and the list goes on. While the restrictions seem somewhat prohibitive, they are only there to keep Nick safe.

One of the nurse's came in while Nick and Kate and I were debating the wisdom of going fishing. The nurse laughed (she thought Nick was joking) and then she had this to say..."We want you to enjoy your time and do normal things as much as possible, but, you must make smart decisions! What you decide for the now, will determine your forever!" Kate & I both smiled like kittens who had just finished a saucer of milk. The nurse again cautioned Nick to make wise choices, especially for the next four weeks. Nick was a big hit with all the nurse's who were so wonderful to us and took great care of him. They were very happy to see him go home, even temporarily.

P.S. - I am doing much better today...I don't expect the mood swings will get much better or any more predictable, so be forewarned. Thank you to EVERYONE for being so supportive and reaching out to us in our time of need! Maybe I'll go to bed earlier tonight! God(s) bless and goodnight.

Gone Fishin'

Got the word that Nick will be coming home tomorrow. He will basically be on "house arrest" while we prepare for the next step, which is apparently going to be a bone marrow transplant. Of course, Nick just wants to go fishing with his Dad and Uncle Steve. I am happy that Nick will be home for the next few weeks or so, but, it is all in preparation for a step that will be very scary for all of us...like stepping off a cliff and hoping someone is at the bottom to catch you. The "honeymoon" (if there was one) is over and I feel the full blown weight of this diagnosis on my heart and it is painful. No one speaks about the elephant that is in the room...or maybe more appropriately the monster in the closet, which only makes me more aware that it is lurking there. I do not know where I will get the strength to do this...my heart is heavy tonight.

Sailing On Rough Waters

Twenty-two years ago today, Sara Caitlin was born! Today is Sara's birthday. She wanted me to put a picture of a cake to celebrate.
Happy Birthday Sara, my sweet girl, you are so special to so many. I hope you know how much you are loved!

Nick and Sara have a special bond and I know this has been hard on her. I asked Sara what she wanted for her birthday and her response was, "I want my brother to get better!"
I wish it was within my power to give her that precious gift! And the ironic thing is, it may turn out to be within her power to make her own birthday wish come true. What a great birthday present that would be!

Meanwhile, back at the Weinberg Center, Nick's nurses were getting ready to begin his chemo. However, sometime after rounds, the plan was changed and it was decided that Nick would not begin the Hoelzer Regimen today. A new diagnosis (as to the type of leukemia) may be in the wind, and therefore, the treatment plan may be modified. We really don't know a lot right now, and by no means does this mean that a whole lot has changed. It just means that Nick may not have to go through so many rounds of chemo. The doctors want him to stay on the oral medicine called "Gleevac," which is "targeted therapy" specific to the Philadelphia chromosome.
The likelihood of a bone marrow transplant (BMT) may have moved up on the list of treatments as it may prove to be Nick's best chance for a cure of his leukemia. Because Nick is so young and he is strong and otherwise healthy to this point, the doctors want to make sure that he is getting the very best treatment option for this still "rare and unusual" type of leukemia. I hope to be able to talk with the new attending, Dr. Karaway, tomorrow.

Nick's day was a mixed bag...he got some good sleep the night before, he had an echo cardiogram (an ultrasound of the heart to get a baseline before he was supposed to start chemo), he took a walk outside the hospital with Sara and Kate, he gained some more weight, and decided he was bored! Later in the evening, as dark storm clouds formed outside the hospital window and lightning streaked across the Baltimore skyline, Nick was quieter than usual and a little worn down, as the anti-climactic ending of this day hit him full bore. I cannot begin to imagine the emotional energy it takes to gear up for something like this, only to have the plug so unceremoniously pulled, well, it is just unbelievable. Was it only seven days ago that everything in our lives changed so irrevocably?

I feel like we are a ship set sail in uncharted waters. We have been set adrift with no compass, no map, no way to know which direction to sail to find our way back home.

"As we sail through life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor!"

I Love You Mom

Dog gone, I'm feelin' blue! Nick had a good day to day, although, the lack of quality sleep seems to be catching up with him a little bit. Today Nick had his lumbar puncture and the first of his intrathecal chemo was given. His back will be achy and sore for a few days or so. We have not yet heard any results from the spinal tap. He is glad that this is over as he had gotten himself a little worried thinking about having this procedure done, but, now that it is over he feels like it wasn't too bad.

His appetite was good and he actually gained a little weight! His nutritional status is extremely important and he needs to eat now while his appetite is good and his mouth is not sore. The chemotherapy can cause a lot side effects that impacts on how and what you eat, so while Nick is still feeling pretty well, our goal has been to pack on the pounds. Tonight he had some Ben & Jerry's ice cream. Yummy!

On Wednesday, Nick will start his first day of the Hoelzer Regimen. We have jokingly renamed it the "Howizter" Regimen after the big Howitzer gun. A new attending doctor starts tomorrow, so I am sure morning rounds will take a little longer. Most of this treatment consists of intravenous medications that will go into the central line that he already has in place. I am still digesting all of this material and so is Nick, although he seems to have a good grasp on what is going on with his medications and his treatment plan.

Kate, Sara, Glenn and myself have been keeping a steady vigil. He always has a new visitor or two each day. Rob came by today and Kate's parents stopped by to bring Kate dinner and see Nick as well. Nick has been happy to receive calls and visitors; and the cards, letters, and drawings always bring a smile to his face. Glenn's "gymnastic girls" all made cards and we will soon be adding them to the walls to brighten up Nick's new apartment.

I guess I am sort of numb right now. I am holding my breath, waiting to see what is going to happen next. Nick wants to be strong and that is my focus when I am at the hospital with him. There is a rhythm to our day and I guess I wish it would be just this easy for the rest of the time to come. I know better, but, I just pray that Nick will be the first patient to have no side effects whatsoever from this massive concoction of toxic chemicals they are about to put into his body. The nurse's have to wear gloves just to open the one by mouth pill that he is getting to treat his "Philadelphia chromosome." (That will have to a be story for another day, if anyone is interested in cytogenics of leukemia)

When I look across the room into the pale face of my first born son, my heart aches for him and the Mom in me wants to be able to fix eveything and make it all better. I must accept that I cannot fix this nor can I take from him the burden that he has to carry. All I can do is be there for him, love him and let him know that we will get through this together as a family. I know I can do that for him...especially when a smile comes to that face and he says out of the blue..."I love you Mom." I leave you with this beautiful Celine Dion song, "The Prayer."

A Mother's Prayer

I pray you'll be my eyes
And watch him where he goes
And help him to be wise
Help me to let go

Every mother's prayer
Every child knows
Lead him to a place
Guide him with your grace
To a place where he'll be safe

I pray he finds your light
And holds it in his heart
As darkness falls each night
Remind him where you are

Every mother's prayer
Every child knows
Need to find a place
Guide him with your grace
Give him faith so he'll be safe

Lead him to a place
Guide him with your grace
To a place where he'll be safe

All In Good Time

This is how I want to see Nick, oh, let's just say next year around this time; triumphant over this horrible disease. He will be somewhere, anywhere, listening to music, hanging with his sister and his friends, reading his books and finding pleasure in the simple things! I cannot wait to see him in that place and so I will help him fight, scream and kick his way down the ugly, unpaved and pot-hole ridden road that must be traveled to get him there.

Today it was decided that Nick's treatment regimen will begin in earnest on Wednesday. His leukemia has been diagnosed to the doctor's satisfaction and thus our brief respite is almost over. The current plan includes a rigorous combination of chemotherapeutic agents administered orally, intravenously and intrathecally (into the spinal fluid via lumbar puncture).

The courses of chemo are labelled "A" and "B", with each one having specific drugs and varying doses. The plan is to give six "rounds" beginning with A1 and then followed by B1, then A2 and so forth until we reach the end of the six cycles. Each round takes five days to administer all the agents involved, followed by a "recovery phase" of one to three weeks; depending on how quickly Nick can bounce back! He must be in the hospital for the administration of each round of chemo.

However, if he does well after A1, he may be able to come home in between the other cycles. There is no way to know how this will affect Nick as each person is different. So please pray that the chemo gods smile down on him and the adverse effects are minimal.

It is possible that Nick may need a BMT (bone marrow transplant), however, it is too early in the game to determine if that will be an option or if it will be needed. They have a BMT team right at Hopkins and they will be contacting us regarding screening for donors and what is involved in BMT, when the time is right.

Nick had a good day today. He was able to spend some time with his sister today and they had a nice visit. We actually got some reasonable "face time" with two of Nick's doctors. Although, I guess I am supposed to feel intimidated, I don't. I have no problem asking questions and getting answers. The nurses have been wonderful and have been doing an amazing job. Nick has already won over many new hearts here at JHH and I am confident in the care he is receiving.

I am doing my best to stay positive for Nick, as I know this is what he wants. He wants to use all his strength to fight this and he needs all of us to support him in this quest. In closing, I will leave you with something that one of Glenn's friends gave him today...

“The philosophy of waiting is sustained by all the oracles of the universe.” Emerson

I need only to look and see that all things happen in their own time. The resolution of each problem has its own timetable. No amount of wishing, wringing of hands or raging will effect a change. Acceptance is the simple act of going through what is presently facing me, be it pain, anger, despair, hopelessness or their opposites. When life as it really is becomes a fact that I accept as naturally as I breathe, events lose their power to throw me off balance or disturb the basic rhythm of my life.

For today: Acceptance also comes in its own time, and I do not berate myself for not having it on demand.

The Calm Before The Storm

"The future depends on what we do in the present." Mahatma Gandhi

Another day of blessed calm.

Nick had a great day and continued to show improvement on his post-cytoreduction numbers. His blood draws are now only twice/day. His white count was down to 14,000 and his hematocrit was up to 28. Platlets stable. He did not need any transfusions today.

When I arrived today, his room was empty. He was "off the unit" taking a walk! He was actually outside for a time catching some rays and feeling the breeze with his "dancing partner" in tow.

Nick went to the Wilmer Eye Institute to have an eye exam. His vision is still impaired and this makes it difficult for him to read, which is something he is really missing right now. The visual changes were caused by the high white cell count, which caused some of the small capillaries near his retina to burst. This blood actually blocks the ability of the eye to create an image, like a curtain has been pulled down on those neurons and they cannot generate an image, or the image is blurred or improper. As the blood is reabsorbed and the body heals itself, the hope is that the vision will gradually return to normal. So, this is also a waiting game. Tomorrow, he is scheduled to go back to Wilmer to have photographs taken of his eyes and all kinds of measurements to track how things are going with the healing process.

Still no news on the type of leukemia yet. In rounds today, the doctors told Nick they were very pleased with his rapid recovery and attribute this to his youth and previous good health. Nick received the cards in the mail from his godson and nephew....he loved the cards and drawing and they will soon be posted up on his walls. Soon, we will have every inch of available space papered with photos, paintings and cards containing words of peace, hope and encouragement from all those who love and miss my dear boy! So keep the good thoughts, vibes and wishes coming his way. I know they lift his spirits, bring a smile to his face, and keep the joy in his heart.

Thank you, thank you, thank you to all who continue to call, email and offer to help in any and all ways imaginable. Knowing we have so many people out there that are pulling for Nick to beat this thing, it just helps so much! I know that this current state of Nirvana is only temporary, but, I am going to enjoy every glorious moment of it! Going to try to get to bed a little earlier tonight. Peace

Be Swift To Love

Nick had a good day today. He was in good spirits and seemed to feel a lot better and with renewed energy. His WBC count has continued to fall and his hematocrit is slowly climbing back up to where it should be. He will most likely receive a few more transfusions of RBC's with a goal of 30. Today his Hct. was 22 (much improved from his admit Hct. of 10!)
He also received platlets today as his were low (this was to be expected)
They took him off his monitoring today, so he was free to move about his room and use the "real" bathroom. He was also much stronger and therefore, able to get up and walk without concerns for falling. He still has his IV pole, with it's myriad of bags and tubing and IV pumps. He has come up with several names for this new best friend, "the birdies "(because they chirp and squawk all night and keep him awake) and his "dancing partner." He hopes to take a shower tomorrow ( and that is a good thing since he is starting to get a little ripe) They have a crazy shower in the bathroom. There is no shower stall. The stuff is on the wall and there is a plastic seat and a drain in the bathroom floor. There is a curtain you pull around and just start blasting away!

He still has his central line IV, so they will cover it with plastic. He also got permission to start walking laps around the floor and he can even go explore beyond that if he feels up to it. He must wear a mask whenever he is out of his room, due to the risk of infection from airborne crudballs. We did get to speak with his "medical" doctor (not an oncologist). He has been very helpful and is willing to spend a few moments to talk and answer questions . I will have to save my rant about Doctor/Family communication for another day, as I am very tired and need to go to bed.

Dr. Ostend was able to shed some light on the kind of leukemia they think Nick might have. However, sophisticated scientific hooh-hah is still taking place, so I prefer not to put it out there right now. As soon as we have a final and definitive diagnosis, I will let everyone know. Nick is still sort of in this "holding pattern" ....the proverbial calm before the storm. Nick spent sometime tonight talking about his outlook on this whole mess. He is definitely his father's child when it comes to the positive outlook and the ability to keep things low key and maintain and go with the flow attitude. He is very determined to get strong and keep a positive outlook on everything that is happening right now. He trusts in the doctors to do the right thing and make the right choices for the treatment of his illness. I am trying to find a balance between patient advocate and overwrought mother of an adult young man, who was, and will always be, my baby!

Today was easy...when things are good, it usually is easy. I got a big hug from my boy before I left to come home. I just pray that God gives us all the strength to get through the difficult times to come. I will close this post with a quote that I found to send to one my soldiers.

"Oh, do not let us wait to be just or pitiful or demonstrative toward those we love until they or we are struck down by illness or threatened with death! Life is short and we have never too much time for gladdening the hearts of those who are traveling the dark journey with us. Oh, be swift to love, make haste to be kind! " -Henri-Frederic Amiel