Gems Rock

Thought I would post about my dancers. It is good medicine for me...takes my mind off all the bad stuff for just a little while. This picture is of three of our "Gems" in costume for their pointe dance called "Music Box." They are supposed to look like ballerina dolls that are trying to escape the music box. They dance to Regina Spektor's song of the same name. All the dancers did a great job this past weekend at the Tremaine Convention/Competition in Washington D.C. This was their first competition and was early for us, so Barbara & I were thrilled when they brought home so many good scores and great placement. I hope to have some more pictures to put up for future posts. So here's the rundown:

Conversation Hearts - 1st place Teen Division (Large group Jazz) This was all twelve Gems and yes, we resurrected the phone dance. Ms. Barbara restaged to make the technique more difficult cause we're good like that. We also won BEST SHOWMANSHIP out of all the teen entries.

Music Box - 1st place Senior Division (Trio - Ballet/Pointe) This was the girls above...Kribsy, Shelbinator and Em & M's . The stage was SO SLIPPERY in pointe shoes, it is a miracle they stayed on their feet. This dance also won BEST SHOWMANSHIP for the Senior Division. Ms. Barbara made the costumes which received high praise and she did hair & make-up too!

Free - 2nd place Senior Division (Small Group Lyrical) The six seniors danced this one and they did a great job. They scored in the low nineties which is great for us. The dance that beat them score like 96.

Le Jazz Hot - 1st place Senior Division (Small Group Jazz) Another number by the six seniors, a real crowd pleaser.

We have a few other dances to add to the mix. But they weren't ready for this competition. Click on this link Tremaine Winners. Then click on "View Winners" from Washington, then scroll down to find our Gems with their Best Showmanship trophies for Hearts and Music Box. Don't they look great! Barbara & I are so proud of them...they have come so far and they are real pros! See I told you it was good medicine! Just looking at that picture makes me smile.

Make A Wish

Milk thistle, milk thistle,
Let me down slow,
Help me down slow,
I've been hurryin' on,
I'm not scared of nothin',
And I'll go pound for pound,
I keep death on my mind,
Like a heavy crown.
If I go to heaven,
I'll be bored as hell,
Like a little baby,
At the bottom of a well.
~Connor Oberst


Another day down at the Hopkins today. All went well and with no unexpected surprises. Nick had his blood work done. He has to go back on Thursday, so this time they only checked his electrolytes, liver enzymes and magnesium. All levels were good and moving upward or downward in the right direction. Then Nick had his fifth lumbar puncture and fourth chemo infusion in eight days. The whole process from start to finish probably takes about thirty minutes. Afterwards, Nick has to lie flat for two hours to allow the chemo meds to disperse up & down the spinal canal and up into his brain. Talk about chemo brain! It is very scary to think of what these toxins are doing to his body. The Ommaya reservoir is still on the table but, we have not yet met with anyone to discuss further. In doing my own research I have discovered that in this area the science has not kept pace. There are still many studies to be done and there is not a lot of data to base treatment decisions on when it comes to CNS disease.

I have decided that "one day at a time" has to be removed from the vocabulary of all people working at the Weinberg. It is uttered so many times a day it has become the universal response to any and all events that happen to you or your loved one while in their care. I haven't quite figured out what cliche expression should replace that one, but, I am working on it.

Dr. Frosty called when we got home to let Nick know that his spinal fluid results were about the same as last time. I guess this was good and bad news as things did not slide backwards, but, the goal of "clear" fluid has not been reached. Therefore, Nick & I will return to the Hop on Thursday for another treatment. While sitting around I sometimes jot down thoughts on what I am thinking or what I have seen over the many hours spent at Weinberg.

"Chemotherapy"

The drugs were the colors of

rainbow sprinkles.

Flowing down a tangled plastic highway

Into his veins.

Cherry red and lemon yellow

A toxic cocktail titrated to

wreak havoc with the bad and

rapidly dividing cells.

Will they heal or will they kill?

Chemical soldiers on a

mission to seek and destroy.

Fighting an unseen enemy.

An unruly gang of thieves,

stealing our dreams of love and life.

Laughing in the face of our

badly thrown punches as we

swing wildly at anything that moves.

~BigD

Good News

Finally some good news for a change. Today we found out that the preliminary results from Nick's bone marrow biopsy are GOOD! Nick's donor marrow is working and on the job fighting Nick's CML! The PCR from his marrow was .3 per 1,000 cells which is very, very good and these kind of numbers can even be found in people who have been in remission for years. Nick's MRI results are also good...no signs of CML cells hanging out on myelin sheaths clogging up the works. Therefore, for at least right now, I think any talk of radiation is on the back burner. And if that was not enough...Nick's doctor called after we got home from his appointment to let us know that the IT chemo Nick has been getting is doing the job! When he was admitted this past time, Nick had over 2,000 lymphoid blast cells in his CSF. This was what was causing all the headaches and pain. After the first dose of chemo, this number dropped to 100 blast cells. The phone call from Dr. F (henceforth renamed as Dr. Frosty) gave us the results from the second dose of chemo...only 4 blast cells!! This is all wonderful news and to say I feel a lot better is an understatement.

Today Nick received his fourth lumbar puncture and his third dose of IT chemo. This time the new attending Dr. Pants has decided that methotrexate should be added back into the mix of drugs as he wants to hit these blast cells and hit them hard. Even when the fluid has been cleared of all the bad cells, Nick will still have to continue to get IT chemo for a period of possibly one to two years! In normal circumstances, after a BMT Nick would never get chemo again. However, because it has come back in the spinal fluid, it now has to be treated long term. Nick's case is so rare and unusual there are just not a lot protocols to follow since there are not enough people with his type of leukemia with its combo of bad stem cells, both myeloid and lymphoid. Also, now with the CNS relapse after BMT, this further puts us into new territory. The doctors have to make the best plan they know and go forward. Dr. Pants was very much for Nick having the Ommaya reservoir placed, so we will want to discuss further with a neurosurgeon and eventually Nick must decide if this is the way he wants to go. More on that later.

Despite all this good news, Nick is not feeling very well. He has been very fatigued and his energy level has been down. He has really lost a lot of weight again with the hospital stay and basically being without eating for quite a period of time. Being off the steroids for the GVHD has caused his appetite to plummet back to his pre-steroid level. He is eating, but, it is going to take a while to put on the pounds. So far no problems with headache, nausea or vomiting. I hope it stays that way. The Decadron they are giving him pre and post LP seems to be working right now. The latest development is a GI disturbance of another nature which can also be bad. So the doctor send a test to make sure that the C. difficile has not returned. It could also be the new oral chemo med that is upsetting his stomach as well. We have yet to figure this one out.

Today at Nick's appointment I got very emotional and really lost it for a little bit. Dr. Frosty was very nice and was so upset he kept asking me what happened? Nothing happened per se, sometimes just being in that place gets to me these days. It was hard going back to the clinic, especially knowing Nick is not feeling up to par. Long story for another day. I got it together and Nick had his LP without any problems. (Still painful, no matter what!) While Nick was laying flat for two hours, we got to talk with Dr. Frosty and Dr. Pants for way longer than they probably wanted to talk and answer a lot of our questions. Dr. Pants told us that Nick is actually discussed quite often amongst all of the attending group because his case is quite rare and I believe they are genuinely concerned about Nick and are trying to give him the best chance to beat this thing. That's why I chose this picture...this is Nick telling the cancer where to stick it!

Cradling the Soul

The title of this photo is "Breaking Apart." Sometimes I feel as if that is what is happening to everything I know about my world. It has been particularly difficult for me lately. I just cannot seem to rebound from this one as quickly as I usually do. I know that I will but, I just feel like there is a heavy weight holding me down and I cannot get up. I have no energy or motivation to do anything, except take care of Nick. In this I am steadfast and I will not give up on this fight.

In the way of updates, I don't have much news today as Nick's appointment was cancelled and rescheduled for tomorrow by the doctor. Dr. F's office just calls up and tells us not to come on Wednesday and plan to come on Thursday. After all, we weren't doing anything right? I am hoping that tomorrow when we do go down to the Hop we will be able to get results of all the tests. Nick has decided he would like to have a meeting with Dr. J and Dr. F and whomever we need to meet with to discuss the latest developments and come up with a definitive plan.

Today was a quiet, gray, dreary, cold and wet day. I am happy to say I did not go out into the cold at all. Nick had a visit from Barry and mostly rested. It has been rough not knowing how all the new medicines are going to effect Nick's body. I am sadly amazed at how much the human body can tolerate in terms of chemical assault weapons. Nick is on so many meds that have side effects too innumerable to mention here. Even the "mild" side effects can make you feel miserable and yet, my boy keeps chuggin' along. He is definitely still recovering from the ten days in hospital and perhaps the chemo is hitting him a little bit in terms of his energy and appetite. His stomach has been bothering him as well, so I hope nothing new is developing. In the meanwhile, Nick went to Kate' s parents for dinner. Of course, I was worried and I did not feel that he was up to it. But, I have to let him live his life. He was very tired when he got home and went up to bed straight away. I hope he feels renewed in the morning.

And on a final note, I want to thank everyone for their continued support of Nick and all of us. Words cannot express how much the love and support of Nick and all of us in this family means to each of us and most importantly to Nick's recovery. Those of us in the trenches get weary and we also need to be lifted physically, emotionally and spiritually so that we may continue to lift Nick. We all need our family and friends more than ever. We are all fighting this horrible disease in one way or another every minute of every day 365/24/7! Can you imagine what that must be like? Please don't be afraid to be in touch with us. Please don't worry about what to say. When we get emails, face book comments, cards, letters, pictures, thoughts, words of wisdom, visits, calls, whatever, it brings us much needed energy, it renews our spirit, it provides moments of laughter, it gives us someone to talk to and someone who will listen. The journey is long and we are still riding the train...I hope that most of you will continue to ride along, because we cannot do it without all of you. I found this poem/writing about friends. The author calls her friends the "She's." All of you are our "She's". Thank you for being there for all of us and especially for Nick. Please keep the prayers and good wishes coming. I know Nick is a little down right now too. We all need a few good laughs right now.

Friends

it was the 'She's' who saved her
pulled her up and pulled her through.
they wove a lifetime blanket of old + wise
green + blessed truths,
that cradled her soul
and saved her from freezing.

Just a quick P.S. - if anyone would like to support one of the soldier's who has a great milblog so that he can win the Weblog Award 2008 for military blogs, please click on this link and vote for the military blog Army Of Dude. http://2008.weblogawards.org
You can only vote once a day for the next couple of days. Thank you for your votes!

Home Again

I am happy to report that Nick is home tonight! After a long day at the hospital, Nick was cleared to go home. Nick was very happy to be coming home once again. Right now, the big picture is still fuzzy and no one is really sure what this new treatment plan will bring, but for now we are all happy to be away from Hopkins and the stress of being in the hospital.

Nick had a bone marrow biopsy today. This morning he got up and walked over to IPOP to find the nurse practitioner who took care of him when we were over there. Nick had hatched a plan the night before to go and ask Mindy if she would do his bone marrow biopsy as she had done it before and she does them all the time and she is very good at what she does. As luck would have it Mindy was there in IPOP and SHE AGREED TO DO THE MARROW BIOPSY! Yeah! When you are having a barbaric test like this done to your body you only want the best. Nick did the best ever with this test. He got the medicine they can give, but, this only really takes the edge off, it does not knock you out or take away the horrible feeling of the "pull." This is when they suck the marrow out of your hip bone and it is reported as an awful, eerie and painful thing, that only those who have been through it understand.

After the bone marrow was over, Dr. Rangy showed up to perform another lumbar puncture and give Nick his dose of IT chemo. Earlier he had been in the room and was talking to us about having something called an Ommaya reservoir placed in Nick's head!!!! This is another barbaric device that is implanted into the ventricles of your head and there is an access port that is completely under the skin of your scalp. This "reservoir" is used to draw out samples of CSF and then give the chemo into the access port. The chemo then runs through the implanted reservoir and into the ventricle in your brain and into your spinal fluid. While this procedure eliminates the need for multiple LP's, it involves a surgery and a neurosurgeon to place it in your head. There are many RISKS to having one of these and the main one is INFECTION. Every time this port is accessed there is a chance of introducing bacteria directly into Nick's head, CSF, ventricles. Dr. SW had mentioned this a few days earlier as a "down the road" possibility, in case Nick was getting tired of the LP's or still needed frequent LP's. I was quite shocked by this coming up today, especially with Nick having all these other tests on his plate. I am not sure if he expected us to say "yes" right then and there or what? Needless to say, Nick has more than a few concerns about this and so this idea was tabled for future consideration.

After Nick's LP was over we started to pack up and got ready to get outta there. Nick & I stopped for some food on the way home and Nick spent a few hours snuggled up on the couch with family before hitting the hay. I think he is still very tired and needs to recover from this long week. Nick was in hospital for ten days! Nick seems to be tolerating the chemo better this time. Perhaps it was the methotrexate that caused the issues last time. The medicine Nick is getting is called Ara-C or Cytarabine. He is also on Decadron, which is a steroid, to try to minimize any irritation to the the brain tissue by the chemo, which can cause the headaches.

We now must wait for the results of the bone marrow and the LP to come back. We are also still waiting to hear the results of the MRI. I ran into Dr. SW by the elevator on my way to the car with a load of stuff. He has been really wonderful (for the most part) and at least a daily presence in the oversight of Nick's care. He complimented me on the job I am doing in trying to keep Nick's care coordinated and all the different arms and heads of the beast working towards the same goal. I think Dr. SW was trying to tell me to keep up what I am doing as it is very necessary. He feels the system at Hopkins is like all things, there is good and bad to their way of doing things. Also, with all these new twists and turns, Nicks is no longer on a specific protocol and there will be many opinions of what we should do and no one know can say for sure what is the exact right formula that will bring Nick's leukemia to it's knees. Dr. SW said, "it is like a ship floating in the ocean." I said, "yes...a ship without an anchor." He said, "no, a ship without a captain." I said to myself...."wow, that's more than a little scary to know!" Guess we will have to captain our own ship to find our way back to safe waters.

"Also, just for the record... Sara Caitlin is my favorite child because she is intelligent, funny, and of course drop dead gorgeous." This is Sara's addition to my post. My sweet girl who has been struggling her way through this just like all of us. Each of us trying to find our way through the emotions that run the gamut from sadness and sorrow to laughter and love. Sara even picked my picture for tonight's post. She doesn't read my blog so if you talk to her, please let her know how proud I am of her and how much I lover her! The journey is far from over and we will all need the strength and support of our friends and family to get through. Please keep Nick in your prayers. While he may be home and feeling better, he is still fighting an opponent who plays dirty and knows no boundaries. As one of the doctors said today, "leukemia does whatever it wants to do and we have no control over it." Truer words were never spoken.

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

My Heart Hurts

So many thoughts running through my mind. Not sure what to say or how to say it...still trying to process, numb in heart and spirit. On Friday January 2nd, 2009, the news was not good. Our Nick has had a relapse of his leukemia in his CNS. I am so sad and heartbroken. I prayed it would not be this. The doctors came (many doctors come when this kind of ish hits the fan) to tell us the results of the flow cytometry from Nick's lumbar puncture. They looked at the fluid and the "blast" cells are back. This is why Nick has been having all the symptoms, the ringing in the ears, the bad headaches, the poor color, most likely the weight loss as well. Nick, Kate and I were there when Dr. J, Dr. F, and Dr. SW all came through and gave us the news. I cannot go into all the medical detail right now, it is late 0300 and it has taken me this long just to figure out how to let everyone know this.

I think we are all in a little bit of shock to say the least. It is so soon after Nick's bone marrow, why, why, why, is all we can ask? The bone marrow seems to be working and we are praying that when they do another marrow biopsy that Nick is still in remission there. I will write more tomorrow to explain. The plan now is that Nick will have to get treatment for the leukemia that is back in his spinal fluid. He must go through a long period of the intrathecal chemo like he got before his transplant. Even though they "cleared" his spinal fluid before the BMT, there is always the chance that the chemo did not kill all the cells that cause the leukemia. When that happens, those cells come out of hiding and the leukemia can come back. He must receive stronger and more frequent doses. The hope is that it can be cleared from his CSF (cerebrospinal fluid) which will mean that there is still a good chance that Nick can beat this thing. Nick is taking it all in stride for today. I am not saying he was not hit hard by this. We all were. It is just that we had some warning that this could be a possibility, so I guess it prepared us all a little. That doens't make this news any easier to hear or accept. God how awful that feeling in your heart or stomach. Nick has already had the first LP (lumbar puncture) and chemo at about 2130 on Friday night. How the chemo will effect him, we are not sure. They are giving him some steroids to try to prevent a "chemical meningitis" that can cause the headaches that come with the LP's.

Before this bomb was dropped, Nick was actually having a better day today. The headache had actually gone away. (Don't ask me how or why) He was up a little bit, ate some food and didn't even throw up. He wants to come home so much. Fortunately, he does not have to stay in the hospital for all of the treatments. Right now, I am not sure when he will come home. We hope soon. The MRI was done today, but, results were not back. Now they will be doing an MRI of his spine as well to check for any suspicious areas, which we hope he does not have. They have even mentioned the possiblity of radiation!!!! This scares the crud out of me and I hope Nick does not have to undergo this treatment.

Please give us all some time to adjust to this news....I don't know how it is possible, but, I swear hearing this news today was worse than the first time. I want to scream and cry and I cannot do any of it. The doctors were not specific, but, of course, this is a road we did not want to go down. More trolls. I cannot even think straight right now. The other day Nick wanted to go home so bad he had packed up all his stuff and was ready to roll out. Later that afternoon, when I saw what he had done, it just made me so sad. How many tears can one person cry? I am trying to be strong and hopeful and believe that Nick will beat this thing, but, it is so hard when the blows keep coming right out of nowhere. I don't know how Nick does it. He has been so strong, brave and patient, waiting to see the light at the end of the tunnel. Thank you for all of your thoughts and prayers. I will let everyone know when Nick is out of hospital. He felt well enough today (before his treatment) so I guess we just have to wait and see how things go with the chemo on board again!

There is some good news...Mr. & Mrs. H went home yesterday after spending a month on 5A.
Mr. H is doing better, but, is fighting a similar battle with a relapse as well. Please find some angels to watch over these guys. Peace

Caution: Bumpy Roads

For any of you out there who don't already know this, try not to get sick or be admitted to the hospital over the holiday! All hospital functions go into hibernate and nothing seems to happen unless you are designated an EMERGENCY in big capital letters.

Current Factoids:
1.Nick still does not feel well and looks like doo-doo. He said he felt "better" this morning, which apparently prompted him to decide he was ready to go home. He then proceeded to pack up all his clothing that was in the cabinet in preparation of his departure. When I came in and discovered this I just wanted to cry and I did.

2. MRI still not done...it's a holiday.

3. IV Acyclovir was started because Nick's spinal fluid had 2,000 white blood cells in it.
Normal = 0. This could be due to infection or the very bad troll has come out from the bridge big time. A test called flow cytometry examines the cells and determines what kind they are....not done. It's a holiday.

4. What will be the plan when they find whatever it is they find? Don't know yet.

5. Nick has had an allergic reaction to either the morphine or the Benadryl he was given at the same time. He broke out in bad, itchy, splotchy hives all over his back, neck, and chest and was complaining of swelling of his eyes, cheeks and nose. Luckily his airway was not involved. Then they had to give him hydrocortisone for the allergic reaction, which is a steroid like medication that can cause immunosuppression, which Nick does not need right now.

5. Nick says he is hungry, but, today unable to eat much of anything. He has already placed orders for tomorrow's food, so I hope he will be able to eat something tomorrow.

6. If I have to type the word headache tomorrow, I will not be held responsible for my actions.

New Year's Eve Baby

Just a quick update so everyone can relax a bit and take a breath, including me. Today has been a much better day. It started with a groggy, narcotized call from Nick saying he was going to go for his test at 9:30AM. After trying to get a coherent sentence out of him for a few minutes, I told him I loved him and that Dad & I were on the way.

Upon our arrival, Nick was already gone. Two hours later, Nick was still not back on the floor. Just as the nurse was calling to check on his whereabouts, he appeared on a stretcher with his big Birkenstock-encased feet hanging off the stretcher and his knit hat on his head. (His hair is growing back by the way!) Sleepy, but, none the worse for wear, Nick was back from his test in one piece.

Shortly after Nick was tucked back into his bed, the doctors appeared for rounds. The test results of the lumbar puncture are not back yet, but, so far "everything looks good." (Translation: We don't really know anything yet.) DR. SW was at rounds and did an exam of Nick. He is now recanting his story and his latest theory is the good 'ol sinusitis headache. I would be really not happy about this except for the fact that Nick is somewhat better today.
He has actually had almost an entire day now without the severe headache. Which is extremely ironic considering he also had the lumbar puncture today, which usually puts him flat in bed with a "spinal" headache for a week stretch. I don't know why this time is different but, it is. Nick said having the LP under flouroscopy was "a piece of cake" compared to the "pin the tail on the donkey" like process he had experienced down in the clinic for seven or eight weeks before his transplant. In addition, nothing like an opiate pain reliever to take the edge off. Nick has been getting morphine (by mouth) around the clock every three hours in order to control the headache pain. He still had two episodes of vomiting last night and at Nick's request they had finally given him Phenagran to stop the puking early in the morning. Thank goodness he remembered we had talked about that...I wish I had asked about it last night. But, it also seemed to do the trick (note to self - write this recipe down in the little bag of tricks!) There has been no nausea or vomiting at all today! YYYYYYEEEEEEAAAAAAHHHHHHHH!!!!!!!!!!!!!!!!!

Nick has actually been out of the bed for a brief sojourn to the chair to eat and sit upright for a time before he climbed back into bed to catch up on some much needed sleep! His numbers all remain steady, with the exception of the bilirubin that is elevated again to 3.1 (Normal is .1-1.2) Doctors not concerned right now, stating it has been that high before. I state it has not. And so it goes.

Nick is still not eating or drinking enough to go home. But, I hope that will change over the next 24 hours. There are plans to do an MRI later tonight??? Nick will be having a small New Year's Eve gathering in the scanner. ALL are welcome, please remove all metal objects and turn off all pacemakers before entering the party. This is invite only...lol!

I am still concerned, but, the terror alert level has been lowered to "Guarded." My combined nurse/mom radar has slowed down the # of pings/second. So I am trying to chill. Right now, Nick is sleeping and Kate is trying to sleep on the hard, extremely uncomfortable bedside chair.
(Translation: TDFLO = Torture Device For Loved Ones I swear the marketing must include something like..."Use of this chair will eliminate most if not all unfriendlies from the bedside. Keep those pesky patient advocates at bay with our most obnoxious chair. Only steadfastly loyal family members and friends can withstand the torture that this chair can inflict.")

We are still all in the gown, glove and mask mode...due to the five day rule out on respiratory viruses. Even though Nick is negative, the precautions must remain in effect. Almost everyone on this floor is in one type of isolation or another!

Looks like Glenn, Kate & I will be spending New Year's Eve 2009 at the Hopkins. I hate this disease for adding another bad New Year's celebration to our list. Nick told me earlier that New Year's has never been a good holiday for him...he didn't elaborate. I remember when Nick and Sara were little, we would stay up all night waiting for the "New Year's baby" to come sliding down the rainbow. This was something Glenn's mom always talked to them about...not sure of the history on this one. In my spare time I will ruminate on New Year's and resolutions and all that good stuff to post at a later date. As you celebrate tonight, please keep our Nick in your thoughts and prayers. Wear a funny hat and do a funny dance just for him. Peace

Sad Puppy

Me and this here puppy are just plumb tuckered out. Once again it is late and I must go to bed. Today was a long day at the hospital.

Nick still does not feel well and the doctors still have not figured out what's wrong. The main issue is A THROBBING HEADACHE that comes and goes several times in an hour. When it gets severe, it causes nausea and then vomiting. Today the new attending, Dr. SW decided to stop the Dilaudid (a very powerful opiate narcotic) that was working for Nick and substitute just plain old Morphine by a pill. Well due to long string of errors, delays and complications, Nick went nine hours without any pain medication. While he did ok for a while, he was soon in extreme pain again. We spoke to nurses and doctors most of evening. When I left, he was taking a liquid form of Morphine that seemed to help for about two hours. He can have it every three, so I guess we will just have to see if it works. Meanwhile, we still don't know what is causing all this. Dr. S does not believe it is all related to the sinus infection, so he has ordered more tests for tomorrow. The plan is to do a lumbar puncture as a diagnostic to check the fluid.
He has already had a CT scan which was negative for anything obvious. He may also get an MRI.

Nick was seen by ENT doctor who stuck probes and tubes into his sinuses....he got numbing medicine, but, not pleasant. Then he coughed for like an hour bringing out all kinds of stuff.
He has not been eating or drinking anything!!! His weight is back down to 149 pounds!! This is so sad and depressing for me. He has lost every bit of the weight he gained while on the steroids.
No one seems to notice or care. They have changed his antibiotic. He continues on all his regular meds, plus about four new nose sprays.

They are also testing to see if his steroid taper happened too quickly and therefore, his adrenal glands forgot to start working again. A lot of his symptoms could fit with a diagnosis of adrenal insufficiency, but, these headaches are just so weird. They do seem like migraine, but, Nick has never had migraine headaches before and he has had these headaches for like 5-6 days now and they seem to be getting more intense with each new day. Tonight his neck also started to hurt...the doctors had already been watching this for signs of meningitis, spinal fluid infection, but, he still has no fever and all of his labs are normal. What is going on with him right now, just doesn't seem to be an infectious type process.

The doctor in true wonderful bedside manner just dropped the biggest bomb of all...that this might be a sign that there is leukemia back in Nick's spinal fluid. This made me sick to my stomach and right now I just cannot believe that this could be what is going on so soon after the BMT. I know Nick and Kate and I were all very upset and worried. Right now I am not letting that idea even into my full consciousness as I cannot and will not accept this explanation.

Nick has been a real trooper but he is tired of being sick and hurting so much right now. He is still not really taking phone calls as he cannot move around too much without starting his head to throbbing. If you have his cell number you can call and leave message or go to Nick's face book. Although he has not been on the computer or anything as he has not felt well enough to do anything besides lay in bed and try not to hurt. I pray to God that the doctors figure out what is wrong so Nick can get better and come home!!!

I am sick myself with Part II of some cold, so I am having trouble sleeping and feel exhausted. This whole thing just hit me like a ton of bricks. It just goes to show how quickly things can just completely turn around and upside down. Please keep Nick in your prayers. Peace

Radar

You know that nurse radar thing...well it is working overtime right now, but, the thing is no one here seems to care. In my opinion, Nick is not getting better and if anything he is worse. I also know that there are a lot sicker people here but, I want to them to figure out what is wrong with Nick.

Nick is just not himself...he is in a lot of pain from the HEADACHE, which is causing nausea, vomiting, vertigo and general badness. This is in turn creates a nasty cascade of other side effects like not being able to eat, not being able to take medicine by mouth, not getting out of bed, sleeping a lot and grumpiness. This is not Nick and these signs are telling me he does not feel well. Nick just doesn't look good to me right now, his eyes are puffier than normal and his color is yucky too.

His "numbers" are good, therefore, there is no explanation there. His tests for germs and bugs are all negative, which is great!! But does not explain why the headache. The other symptoms are all coming as a result of the pain in his head. Of course, if he keeps lying around in the bed he will end up with pneumonia or DVT's or some other malady!

They are treating the symptoms with anti-nausea medications and they are trying to control the pain of his headaches, so far without success. He has gone downhill since we got here that is for sure. I finally got a doctor to come and sit down and talk with me. Thank you Dr. D (Fellow) - she agrees there is something going on and agrees to talk again with Dr. A (Attending) and maybe get a CT scan just to rule out anything going on in Nick's head. I will feel a lot better once they have done the CT scan...but, I am still very worried. Sometimes I think I am crazy...but, I know I am not. Every time stuff like this goes down, my instincts are usually right. I hate when I second guess myself and I hate when Nick does not feel well. I will update later if I am able.
Please keep Nick in your thoughts and prayers. Florence Nightingale over and out.

Forever and A Day

Sorry I can't put up a pretty picture, but, I am at the Hop and the site is blocked. Not to alarm anyone, but, Nick had to be admitted to hospital yesterday. He has not been feeling or looking well for quite some time now and I guess it all came to a head in the past couple of days. Once again, I hate to say it by my nurse radar was right again. I would love try to give you the reader's digest version...but, you know I am not good at that. So here goes...

Nick has had a cough and a cold for four weeks now. On December 17th, his chest CT scan was clear, despite a horrible cough and upper respiratory symptoms. Nick felt good on Christmas Eve, but, since then not so much. His symptoms include the cough, respiratory congestion, sort of bronchial wheezing, decreased appetite, decreased energy, HEADACHE (different from spinal headache, different from leukemia headache, different from sinus headache) but painful. In addition, Nick started throwing up again on Friday, 12/26 with decreased fluid intake, despite his protests to the contrary. He had lots of plans...but, mostly he just laid around the house and sleep.

I called the outpatient department on Friday and spoke with triage nurse...her advice was to watch and wait and encourage fluids. Of course, Nick did not want to come down to HOP so I agreed to this plan, as at this point he had only thrown up once. However, keep in mind, I still don't think he looks that great and I let you know when I think he does. When Nick was at clinic on 12/17, I did not think he looked good or felt good, however, Dr. F thought he was doing great and even suggested Nick could get his labs done at another lab and have the results faxed to him. I'm just thinking to myself...ok, well maybe that will work out. NOT!

The following week on Tuesday, 12/23 we went down to Hop clinic, had labs drawn. Nick was a little grouchy (he is tired of all this and I don't think he was feeling that well either) This was the night that I had planned to go to airport for Operation Welcome Home, so we drove home and we weren't in the door five minutes when his nurse called to say his magnesium was low and he needed to come back to get some in an IV. So Nick drove down there and spent another three and a half hours getting Mg.

Meanwhile, back to this week....Saturday, 12/27: Nick woke up not feeling well again, threw up three times in the morning. Called the pager service, luckily it was Dr. D (a really nice fellow that knows Nick pretty well) I spoke with her first,then Nick got on the phone with her. She decided that he needed to be admitted to at least get some labs drawn and IV fluids. So off we went down to Weinberg. Since then the following things have happened in no particular order:

1. Admission VS - Nick remains without fever which is good, but weird.
2. I had to get a wheelchair to ride him up to 5A as he was so wobbly and unsteady on his feet, which he even agreed too!
3. He was and remains very dehydrated! He got two liters of fluid last night and is on faster IV rate now and he has still on gone to BR to void two times since he was admitted!!!!
4. He continues to have intermittant emesis of unknown cause...they stopped his one anti-nause med (Zofran) due to the possibility that it could be causing his headaches. I do not subscribe to this theory at all as he has been on the Zofran forever without a problem . He is on IV Ativan now which seems to be helping a little.
5. Nick continues with headache, painful 7/10 pain score which is high for NIck. Why??? No one knows.
6. Sinus CT scan - results ??
7. Chest CT scan - shows he might have a "walking pneumonia." The doctor last night thought she heard wheezing, today's doctor says he is "clear" but, he still may have a "viral" pneumonia
8. They started him on antibiotic called a Z-pak. This is by mouth.
9. They will be having infectious disease team and pulmonary team consult on Nick's case.
10. He was also tested for other respiratory viruses. And therefore, we all must wear gowns, gloves and masks at all times in the room.
11. The whole place is on "germ lockdown" due to flu season, so all visitors had to wear masks in the patients rooms anyway. The gown and gloves are just a BONUS! As my New Jersey blog-o-sphere commenters would say..."Noice!"
12. Since Nick's line has been out for a while now...he has been getting stuck and had to have a regular IV started in his arm. He has been a trooper, but, that line sure does spoil us all.
13. Admitting doctor was concerned that vomiting might be related to gut GVHD coming back and wanted to start steroids back up. Nick came off the steroids on Friday, December 19th. Ever since then the picture has been confused, wondering if the steroids being off was what was effecting everything from soup to nuts regarding Nick's condition; for example, his counts, his appetite, his energy level, everything. I asked them not to start the steroids without consulting with GVH team first. So that put them on hold and now Dr. A agrees we don't need to start them now.
14. Nick has also had ringing in his right ear for almost a week. All of his symptoms could also be explained by "tacrolimus toxicity." The symptoms include: headache, nausea, vomiting, tinnitus, numbness or tingling of extremities. So of course I was concerned...they drew a level at the wrong time, so now it has to be repeated. Waiting for results....it has been in the normal range, however, the body can still have symptoms of toxicity even when the level is within normal range.
15. Nick has lost weight again. Ever since he has been of the steroids his appetite has diminished markedly. He did weigh 160 pounds on 12/10...it has been slowly creeping downward. Yesterday on admit, his weight was 151 pounds. Not sure what to make of this...but, it really drops off quick when he is not eating. I wish that would work for me.

I was hoping when I arrived today that Nick would have perked up and I would be taking him home. That is not the case and Dr. A wants him to stay at least overnight one more night.

Nick has his cell here in his room so you can reach him that way...or leave messages on his facebook account. I hope we wont' be here too much longer. But, it seems there is more going on than meets the eye and at least now we can figure it out and hopefully get it fixed. Nick wanted to be home in time to watch the Raven game...now that ain't gonna happen. He has been so wiped out I don't know if he will even have enough energy to enjoy it.

Needless to say, I am upset that Nick has to be back in the hospital. The thing is they really don't have any good way to treat patients like Nick when they do get sick, other than admitting them. The last thing they want you to do is hang around in a hospital ER or a Patient First with all the germy people. Beatle song (Elanor Rigby)....Oh, look at all the germy people.

Doctor from pulmonary just came in....says that Nick has a hugely socked in sinus infection, involving the maxillary sinuses and the ethmoid sinuses. Increased dose on Z-pak. Showed me CT scan of chest and sinuses. Nick has something in bases of both lungs, the question is what??

I need to stop now...updates later. Oh, guess who I discovered is on this floor with us...the H family! Got to talk to Mr. H's wife today for a good period. They are still have a rough go of it, please keep them and Nick in your prayers!! Also, BTW today marks seven months that Nick has been fighting this battle since he was diagnosed and yesterday was his four month mark since his BMT. It seems like forever.

Ave Maria

I love this dance. Choreographed by Mia Michaels. It is beautifully danced as well by some very talented and gifted dancers. As Mia would say...it speaks to me.

Arlington Silent Night

Beyonce vs Little Girl Arianna

This video cracks me up! This little girl has some fierce moves!

Tis The Season To Be Jolly

How fast the time goes by...still haven't done any Christmas shopping for anyone in my immediate family. Hmmm...how many days until Christmas? Try to enjoy the moment doesn't allow much time for shopping. Things at the studio have been busy...this is our last week of classes before we go on holiday break, so all the gifts for teachers, apprentice helpers, and company dancers must be gathered and wrapped. The Gems Christmas party is this Saturday AFTER rehearsal.

Went to the hospital with Nick on Wednesday. It was a late appointment (2:15PM) and even later by the time we got home (8:00PM). Nick got his blood drawn and then he saw Dr. F. Dr. F is like a beacon of light in a dark fog. He is the only doctor in this entire six (almost seven) month odyssey that Nick has seen on a regular basis. Dr. F is an oncology "fellow" which means he is still working his way toward becoming a full-fledged oncology specialist. His training has been endless and still he toils away at this thing we call medicine.

Nick has had a cold and cough for going on three weeks now. There have been lots of nasty germy illnesses going around and this is one of them. We have all had it....Kate, Glenn, and me!
I am almost better in one week's time, which goes to show what a healthy immune system can do. Nick on the other hand is still straggling along with the crud. Dr. F ordered a chest CT just to make sure he didn't have anything trying to take hold in his lungs. Fortunately, his lungs are clear. He remains without fever which is a good thing, although his WBC & ANC counts have continued to trend downward for no good reason that anyone can figure out. The doctors are not overly concerned right now and feel that Nick is doing well. However, his immune system is still fragile and he must take precautions as always, especially now when his counts are down.

The graft vs. host disease seems to be under control. Nick's skin and gut seem to have recovered nicely. His liver enzymes are still elevated, but, heading downward (back to normal) slowly but surely. Nick is almost off the steroids...they will be done by the end of the week. So far so good with regards to the fact that the GVH has not reared it's ugly head. He remains on the anti-rejection/immunosuppressant called Pro-Graf (tacrolimus). He will continue on this drug for a while, not sure how long.....could be forever. He remains on his Gleevac to keep the CML (Philadelphia chromosome) at bay. Dr. F seems to think that Nick can even cut down on the frequency of his clinic visits, to every two-three weeks if he continues to do well.

For now, I will take the good news and thank God for Nick's continued recovery. On my way to the cafeteria, I saw a hubby & wife team, we called "Nick's roommate" while Nick was on 5B getting his BMT. I have talked about them in prior posts. Mr. H also has CML and he was receiving his second transplant the same month that Nick was at Weinberg. I am sad to report he has been readmitted and has been on Weinberg for the last twelve days. Mr. H has been going through some rough stuff, so please keep him and his wife in your prayers. It was quite a shock for me, as I thought Mr. H was doing so great. Nick & I hadn't seen them in a while because Nick was still in IPOP and Mr. H had gotten booted down to the clinic (because he had been doing so great!) I was hoping they were back to their home in DC. They have spent so much time at Hopkins in the past two and a half years that a while ago they decided to just buy a place nearby where they can live!!!! It really hits hard when any of the patients you meet along the way take ill or take steps backwards in their recovery. It's that damn troll jumping out from under the bridge! It doesn't matter who he is terrorizing, it is scary and he really knows how to suck the life out of a party. He really needs to lighten up...maybe drink some eggnog or something...if not, I have some other ideas that won't be nearly as pleasant. Good night.

Nutcraker Sweet

Today was the Christmas Parade. It was VERY COLD & WINDY!!
The Gems and the Sparklers did a wonderful job dancing their way down Main Street. The wind was the worst...quite gusty! The parade route was very short, but, we were all still frozen like popsicles by the time we got to the end of the parade route. Many along the route said that our dancers were the BEST! Oh, yeah! I hope to have pictures to post of the dancers in their parade get-up. I am quite tired, it has been a long week. I did not see Nick all weekend, but, he is home now and he seems to be doing well. Nick does not have to go back to the Hop until Wednesday! Seems very strange...I hope my car doesn't drive itself down there.
Planning to do a lot of catching up with home and work for next couple days. I am so behind on my Quickbooks...argh! Right now it feels really good to be in a warm, cozy house! Peace.

Easy Come, Easy Go

Good names for puppies..."Easy Come" & "Easy Go!" But I actually meant it with regard to Nick's line that was pulled out today!!! A very exciting and scary development for Nick and me too! Today we got up way too early and arrived at the Interventional Radiology Department around 8:30AM. After a two and a half hour wait, they took Nick back and "removed" his Hickman catheter. The procedure took all of 30 minutes from start to finish and Nick didn't even need sedation. Just a little bit of local anesthetic at the site and then yank, tug, pull and Abracadabra, the line was in a baggie and we were walking out the front door! It is amazing and anti-climatic at the same time. Nick has been fortunate that he hasn't really needed any transfusions since his BMT. They were mainly using the line for blood draws. Now that Nick has been kicked down to the clinic (as of this past Wednesday) Mindy and Dr. F felt comfortable in having the line removed.

In some ways the line feels like a safety net, but, it is really one that Nick doesn't need. The longer the line remains in, the greater the chance of infection finding its way to this foreign object; so it was a good thing to have it out sooner than later. Nick has done fine throughout the day without this appendage, so we bid the power Hickman a fond farewell. Of course, we just took delivery on a two month supply of line care stuff and the home care place cannot take it back.

Next week, when Nick shows up at the clinic to get his labs drawn, he will have to start getting stuck again. Hopefully, after once/week visits for a while, Nick's doctor will decide to let him back down to once/two weeks visits and labs. That will be nice!

Nick & I met with Dr. F (the doctor that used to do his lumbar punctures) on Wednesday. Now that he no longer is in IPOP, he is no longer followed by the Bone Marrow Transplant Team. Now he will be followed by the medical oncology doctors. Nick will still be followed by the graft vs. host team as needed. Right now, all the medical types seem pleased with Nick' s progress. His GVHD has shown improvement and it seems that the liver enzymes are finally headed in the right direction (i.e. - DOWN). His counts have been OK, but, they seem to be on a slight downward trend, so they are being watched closely. Nick has had a cold and cough the past few days, but, no fever. The steroids for the GVH are still being weaned downward and it won't be long until he is off of them altogether; hopefully, with no resurgence of the acute GVHD.

I seem to have a lot of emotional baggage to deal with lately...not sure why. I guess as Nick's daily physical needs decrease there is more time to think and the big picture worries seem to find their way into my consciousness. There are no answers to a lot of the questions I have...so I have to accept that this is the way that it will be and continue to move forward with my life, such as it is right now.

The holidays are a mixed blessing, mostly for the good though, as I am enjoying the Christmas music and the holiday decorating at the studio and home. I have no idea when I will go shopping for Christmas, luckily, I don't need to shop for very many people. The Gems and the Sparklers will be performing in the local Christmas parade this Sunday, so it will be a COLD and busy weekend. I hope to have some pictures to post of all the dancers in their Christmas garb.
Last year's parade was canceled due to bad weather, so I hope we fare better this time. It is such a big disappointment when they cancel the parade after all the time and hard work that has been put into our performance. The Weinberg center is also decorated for the holiday. They have a couple trees and other decor that are really pretty. Two days ago, an oncology nurse from Hopkins gave a piano concert of his own original holiday songs. I wished we could have been there!

Anyway, I guess that is enough of an update for now. Nick is doing well and I can only pray that he continues to improve and grow stonger each day.

Better Days

Wanted to find something that made me smile. This is a picture of Nick and all his crazy hair at Kate's graduation from College Park...May 2007?

Nick is doing OK....due to go back to IPOP this Monday. If he continues to move in the right direction, he may even get booted down to the clinic.

Nick & Sara put the Christmas tree up today...we bought a "fake" tree last year, which is actually a good thing for this year, since I don't think we are allowed to have a real one due to infection risk to Nick. I also love the fact that the lights come on the tree, just plug in and voila...instant Christmas tree. As I knelt by the tree, arranging all the fake branches (who knew that could be so time consuming), the memory of how much Mickey loved to play under the tree came back to me. It is strange how random moments just pop up. I still miss my kitty.

Sorry I don't have too much in the way of news...it is a waiting game in so many ways right now. That is all we can do...please keep Nick in your prayers.

Melancholy

Not much to report today. Nick & I will be off to our "downtown doctors" tomorrow. Nick will head to the HOP for his routine blood draw and visit with his nurse practitioner. I do not have his counts from the last visit, so I hope to have the results from today and Monday soon. Nick was seen by the graft vs. host nurse on Monday. She was very pleased with the way his skin looked and did not seem overly concerned by his still quite elevated liver enzymes and bilirubin. Apparently, it takes a while for these numbers to come down, so "not to worry!" HA! Now that is easier said than done. I myself am off to have an X-ray of my hip due to much pain and aching of unknown origin. My emotional state runs the gamut and I never know when I will be tapping in an elevator or crying in a bathroom. This journey has been and will remain a challenge for us all. Hiking through the woods with no map, no compass and no way of knowing what scariness lies in waiting...well let me just say, it takes a toll. I guess we are all coping as best we can and continue to pray and hope for Nick to get through these woods unscathed. (If we can even begin to imagine how all that he has already been through will not forever change him in one way or another!) Anyway, I will end this post with a poem that I found...I like it.

"The Peace of Wild Things"

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

~Wendall Berry

Puddy Tat

I miss my kitty! I miss a lot of things. I would love to get another cat or a dog, but, it's not in the cards for right now. I have to put that on the back burner, along with lots of other things. I hope all that stuff doesn't get burned up back there while it is waiting to come back to the forefront of my life.

It snowed today...that was cool and they started playing Christmas music on one of the local radio stations here. This day is celebrated by myself and several of my "Christmas" music lovin' friends. I guess I shall also give fair warning to anyone who is still reading this blog that my playlist will soon be switching over to all my Christmas favorites! So be forewarned if you are the embodiment of the Grinch or Scrooge, your ears will soon be assaulted with red,white, and green music for the next few weeks. I am bound and determined to enjoy the hell out of Thanksgiving, Christmas and New Year's. I always enjoy this time of year (with the exception of a few pet peevy kinds of things, perhaps to be addressed on another post) and after spending so many years working holidays, I still appreciate being OFF for three major holidays in a row!

News on Nick...we went to IPOP twice this week, steroids are tapering, appetite still booming. Liver enzymes and bilirubin are still elevated. These numbers and the acute GVHD are still a worry to me and I get the feeling that the powers that be are more concerned than they are telling us. No one has taken the time to explain much of anything on this front. So I worry and wait. Nick has to go back down to the "hop" tomorrow for more blood work, so I guess I will know more after we get those results.

Nick, Dad, Uncle Steve & Aunt Michelle ventured out this evening for a concert by Loudon Wainwright. The concert was in Annapolis so I was a little worried (OK a lot worried) about a myriad of things (the length of the day, the distance to get to the concert, icy roads, germy people, germy air, germy food, and germy inanimate objects of all kinds! ) I am happy to report that Nick is home safe & sound, seemingly none the worse for wear, just tired. I can relate to that.

“There is something about the presence of a cat...that seems to take the bite out of being alone.” Louis Camuti

Endure To Conquer

Each day has an ebb and flow. Today was calm like the small waves that lap at the sides of a boat moored in shallow water.

Nick & I journeyed to Hopkin's for our third time this week. We had a long discussion with the charge nurse...lots of venting about frustrations, power plays by nurse practitioners, our feeling that we would not be lemmings in this sea of humanity that apparently has drunk the Kool-Aid and cannot muster enough energy to get up and go home. We came to the conclusion that things have not been up to par in terms of the communication between Nick, myself and the staff. A plan to address the issues was formulated.

In the meantime, here is an update on Nick and other random factoids.

1. Nick is still being treated for acute graft vs. host disease (I hate that word!)
2. His liver enzymes were all elevated at one point, however, the stubborn ALT was up the highest to 838! (High normal is 40!) FINALLY, all of the liver enzymes have started to slowly come down, although they are all still out of normal range on the high side. This is a gradual process, but, at least the values have started to move in the correct direction.
3. Nick continues on his mega doses of steroids and his anti-rejection drug, called Prograf. They increased the Prograf dose a few days ago due to his level being low and perhaps this has been the thing that helped the numbers to go down.
4. Nick's bilirubin is also high. The bili is also a reflection of liver damage/function. So the doctors are watching this one too.
5. All of Nick's other labs have been looking good. He has been very stable with his counts and has not required any kind of transfusions since he was discharged from the hospital.
6. So far Nick has been "infection" free!!! No fevers or other problems. (KNOCK ON WOOD)
7. Nick has the "moon face" look that comes with high dose steroids. The steroids can also increase the appetite. Nick is eating all the time since his steroids kicked in...I hope this keeps up, because he needs to gain weight anyway.
8. Today we got lunch and walked in the mall for exercise. Nick still is way down on his energy and endurance; and the steroids actually make him feel like he has a lot more energy than he actually has. After one lap and a set of stairs, Nick was tired and said his muscles were weak so we hit the Cinnabon and then headed for home with our calorie-laden Cinnabon's in hand.
9. We moved over to the HIPOP side this week. Nick had Flo for is nurse. She is really great and actually examined Nick and spent some time with him. She actually changed his dressing on his line twice this week, without argument. It's a MURACLE!
10. Nick has felt better this week than any time in my recent memory since his BMT. The weekend is Nick's time to relax, see Kate, and chill. This is always a much needed break (for both of us) to catch up, recharge and prepare for the next round. Talk at ya soon. Peace.

“Perseverance is a great element of success. If you only knock long enough and loud enough at the gate, you are sure to wake up somebody.” Henry Wadsworth Longfellow

“If we are facing in the right direction, all we have to do is keep on walking.” Buddhist Proverb

MASCAL

Did everyone remember that today is Veteran's Day?

I hope the answer to that question was yes. Below you will find a story written by a nurse who cares for wounded soldiers coming home from Iraq and Afghanistan everyday. She is a wonderful writer and her stories are always poignant and oft times sad. Her main point for this story was about how the "war" has simply fallen off the radar screen for most of the American people and certainly as an issue in the recent election. Well...the war ain't over and the troops are still there and they continue to be deployed for fifteen month tours two, three and even four times. The soldiers are coming home wounded...physically, mentally and emotionally. The systems that are in place to take care of these men and women are woefully inadequate and underfunded. Please make an effort to educate yourself, your family, your friends about what is going on in the world. Read and be pro-active on veterans issues. If these men and woman in our armed forces are willing to fight for our freedom, the least we can do is be an informed citizenry. We must stand up and stand behind our veterans, that is our duty.

Here is the post by Clara Hart RN. She works in a military hospital in the U.S.

With all the talk of the elections, the economy, the housing crisis and the financial bailouts, for too many Americans the wars have slipped into nonexistence. I was sickened listening to the radio one morning this past week; reporters speaking with people waiting in line at various polling places found the most prevalent thought in the minds of Americans was the economy. What about our troops? Has America forgotten our sons and daughters who fight on foreign soil? Or their families who struggle silently alone?

For several weeks I have drifted south in a mire of sadness, depression and fatigue. War is what took me there, these wars most people seem to have forgotten. I walk into work and the war is clearly evident. It is heartbreakingly apparent -- from the patients lying in the beds, to the families sitting in the waiting rooms, to the returning nurses, medics and physicians whose battle has now become PTSD.

Weeks ago I attended a funeral at Arlington National Cemetery. I watched the wife and children of the soldier laid to rest walk toward the gravesite. Tears flooded my eyes as my ears were filled with the sobs of his preadolescent boys.

Recently I cared for a patient, newly arrived from Iraq after being shot. He was a little confused, as most are. His behavior vacillated between somewhat normal and slightly inappropriate; furthermore I seemed to be the only one he listened to. When he flipped off a commanding officer he had just met I stood between the two and admonished him that I didn’t want to ever see that particular hand signal again. I then turned to the CO and shooed him out of the room before the dressing down could begin.

Later that day after hearing “Clara!” bellowed in a frantic, fearful tone, I hurried into his room to find him holding his IV tubing. He looked at me with panic-filled eyes and said “Clara! It’s a trip wire, somehow they got in here and wired me! I’m gonna die." Many, many moments later I finally convinced him it was not a trip wire and he was not going to explode and die. I then carefully moved the tubing into a position where he could not see it, and distracted him with the latest football scores.

Yesterday I listened to a medic talk. Recently returned from OEF, the only way he could sleep at night was with prescribed sleeping pills, and even then he still had nightmares. While conversing I mentioned a MASCAL* I worked as a medevac nurse, a bus accident on a highway. On final approach to the LZ I looked out the helicopter window to see bodies lying on the pavement. He said, “Yep, I seen that too, only on a dirt road and the bodies were all kids.”

Today another nurse called, one already suffering from compassion fatigue, who had put in for a transfer to another section where the stress was lower. Tired and distraught, she told me her marriage was falling apart, her husband had left, and she was in serious emotional trouble. I told her to go pack her pj’s, hop in the car and head over, promising a slumber party.

Today is Veterans Day. While I personally continue to fight against compassion fatigue and PTSD I will remain where I am, caring for the veterans of OIF, OEF and GWOT. I only wish I didn’t feel as if awareness of our troops has faded into nonexistence and that the wars we fight have been forgotten. You see we pay a heavy price, and for that price is it too much to ask America at least remember?

*MASCAL: mass casualty/disaster

A Better Day

After feeling so bummed on my last post, I just wanted to give everyone a brief update. Nick is doing a little better now. I am not sure why, I guess it could be the medicine. His appetite has improved and he is eating more (most likely due to the steroids). We went to IPOP today and his liver enzymes are still elevated, but, they did come down slightly. The bilirubin also came down a little. Nick got to stop one medication (the one for the gut bacteria called Flagyl.) This was very hard on his stomach so that is one less thing to bother him.

Nick will be spending the weekend with Kate, so I will be off to the studio this morning for Gems rehearsal. Barbara is off to New York with a group from Kennard Dale to see "Wicked." She has been wanting to see this forever, so I am happy that she gets to go do something fun. I know it has been rough on her carrying the day-to-day of the studio for so long.

I must apologize for my emotional ups & downs, but, it is what it is and I am sure there will be more to come. I ran into one of our Weinberg buddies. Mr. H & his wife had the room next door to Nick when he was in the BMT unit. Mr. H has the same diagnosis as Nick, but, he is on his second transplant. Mr. H and his wife are two and a half years into their battle against this disease. It seems that this transplant has been a success to date. Mrs. H (they are a young couple, maybe in late twenties or early thirties) is always upbeat and helpful with her insights and advice. I'll never forget when we first spoke, she called us "newbies", which we were of course compared to them. Nick was initially doing so much better, but, now Mr. H is kickin' his butt. They have finally been discharged to the clinic and Mr. H seems to be doing well. I know Nick will get there it's just taking way longer than I want right now.

Today was an upbeat day and Nick is feeling better, which is all that really matters right now. Thanks to all who have been reading the blog and keeping up with Nick's progress. Please keep Nick in your prayers and if you are one of Nick's buddies or friends, please don't be afraid to call, email, or visit. I cannot say enough how much Nick looks forward to hearing from his friends and he really lights up when a visitor shows up on our doorstep. The only time to stay away is if your are sick, you think you might be getting sick or you have recently been around sick people.
Time to hit the hay....oh, BTW Nick has off the whole weekend. If all goes well, we won't have to go back to IPOP until Monday.

Broken Places

"Perhaps strength does not reside in having never been broken...but in the courage required to grow strong in the broken places." ~Kristen Johgen

Today started off in such a quiet and mundane way. I felt calm and I had energy to start a new day. It would not be long before the peace of the day was directed onto a new path.

Nick was still sleeping when I got up and started my morning. Puttering about the house, vacuum the rug, feed the birds, make the coffee, wipe the counters. Then I heard Nick upstairs and I realized he was throwing up. It has come to the point where my heart sinks everytime Nick gets sick now. It just represents "illness" and loss of fluids, loss of electrolytes, loss of pills just painstakingly swallowed, loss of calories and fluids eaten so slowly and carefully, loss of control over one's body and a cruel reminder that we haven't beaten this ugly troll yet!

Nick had also experienced dizziness and vertigo and threw up again before it was all said and done. We decided to call IPOP and they told us to come down to the hospital. Upon arrival, Nick had the usual weight, vital signs and blood drawing. Nick got hooked up to some IVF's to rehydrate him (even though they never seem to feel that he is dry).

Then the news came that Nick's liver enzymes and his bilirubin from today's labs were very elevated. I was actually shocked by the numbers and felt sick hearing this (one of my worst fears in this whole process) This basically confirms that Nick does have acute graft vs. host disease of the skin, gut, and now liver. The first two are bad enough, but, this just tears it! Now because the liver is involved, treatment must be started.

What treatment you ask? Well, in order to treat GVHD, the immune response must be suppressed. Basically what is happening is that the donor marrow that Nick got is attacking his skin, his gut and his liver, thinking it is foreign. The only positive in this whole scenario is that the donor marrow will also attack Nick's leukemia cells and kill them too. However, the problem is finding a balance between the graft vs. host and the graft vs. leaukemia.

GVHD is a major complication of bone marrow transplantation. The protocol Nick was on was supposed to prevent any serious GVHD. The best outcome would have been for Nick to get a "mild" case of GVHD that would not require treatment. Now that ship has sailed. It is yet to be seen if this will remain what the doctors still say is a "mild" case of GVHD. If this is mild, I don't want to see anything worse!

Back to the treatment portion of this tirade...Nick must now start on two medications (Prednisone (i.e. steroids) and Prograf) that will attempt to stop the marrow from attacking Nick's organs. If the GVHD is limited, they try not to treat for as long as possible to get the best graft vs. leukemia effect. But now that Nick's liver is showing signs of GVHD, treatment must be started. Besides all the side effects of these meds, the big down side is that while Nick is immunosuppressed he is more prone to get an infection. So he has to be super cautious and vigilant about exposures that could cause an infection. The risk of infection is so serious that they must start Nick on medications to make sure he doesn't get anything; therefore, he must also start taking big gun antibiotics, antifungals and antiviral medications just to try to prevent him from getting any number of nasty germs.

I am so sad right now I don't know what to do with myself. I just want to scream and cry and punch walls. Tonight after we got home, Nick spent time with Kate, who had been waiting patiently for us to get home. This was supposed to have been an off day, so the two had planned to get together and hang out. I know Kate was the only good medicine Nick got today. He couldn't wait to get home and he was so relieved and happy that she had waited for him. I told him of course she would wait for him! Thank you Kate for providing a brief respite in an otherwise nasty day! You are the best thing for Nick's heart and soul.

After Kate left, Nick tried to eat and drink a little. He is supposed to drink even more now to flush all these drugs from his system. (I have no clue how he is going to do this since he has been barely able to drink the minimum before all this happened! The doctor stands there and tells us that the one med can cause "renal toxicity" but, just do the best you can to drink! I am thinking to myself...."Are you nuts Mister?") Nick then tried to take all these new pills and it made him sick to his stomach and he threw up all the precious food and fluid it took him all night to eat. I just wanted to cry...how much more of this burden must Nick carry? Why, why, why??? Life sucks and it is so not fair that Nick should not have to go through this and it seems like things are just getting worse right now.

Well I guess I don't have anymore to say...I am at a loss right now. Who will fix our broken places?

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” Henry Wadsworth Longfellow

Turn Back Time

It is o120 and I have decided to try post something here. I have not been in a very good place of late. From my perspective, things have been piling up like cars on the freeway on a foggy night. My days and my emotions run high and low, scattered like the paint on a Jackson Pollack. I don't know what is wrong with me and I don't know how I will fix it. Nick has been gone all day. I am afraid I miss my boy, but, he does not miss me. I really don't care what he should be doing right now as a "normal" twenty-six year old guy. I only know that the reality has been forever changed and I was not the one who changed it. I still want to run screaming into the night and wake up from the nightmare that I am living. Everyone seems so calm and unaffected. Well I am not. If anyone thought I was...well I wasn't. I know I am not the first Mom to go through something like this, I know there are more tragic and horrible stories. Right now I don't give a hot damn about any of it.

Nick went to IPOP on Saturday morning with Kate and he won't be home until later today. Nick has started driving again and it was very strange watching him drive off to run errands the other day. It has been downhill ever since for me, as I feel that he will ultimately end up doing too much or get exposed to some nasty bugs and end up sick (a relative term by all standards at this point!!) If Nick doesn't get sick, than I for sure will because I am worried. I want to be one of those people who turn to drugs and alcohol or some other form of excess to solve their problems. I could work my way onto VH1's Celebrity Rehab show. I like Dr. Drew a lot and I think he could help me. Now where can I get some mind altering substances to take away all my worry, pain, sadness, anger, frustration, fear and grief! And anyone who doesn't get this need not reply. So here are the facts and the theories on the reasons for my madness as I choose to present them.
1. First the really good news....the results of Nick's bone marrow biopsy also showed that the marrow was 100% donor. But, here is the weird thing...on the lab paper they give you it reads "no evidence of patient DNA." I know this is supposed to be a good thing, but, it doesn't feel good to me. When I read those words it just breaks my heart. It is so strange to know that Nick has someone else's DNA coursing through him. Yes, this is what is supposed to make him well, but, right now it is hard because he is not well yet. He does not look well and he does not feel well and knowing I am powerless to fix this problem only makes me angry that he had to go through all of this hell. And this is really only the tip of the iceberg, I cannot say more, but, I feel many more sorrows than I can say here.
2. The results of the colonoscopy showed that Nick has graft vs. host of the gut and maybe skin. Most likely this accounts for all the GI symptoms he has been having, although, the bacterial infection (C. difficile) and the medicine to treat the C. diff are also likely culprits as well. Nick is still nauseous (a lot), vomiting (sometimes); he still has abdominal cramping and pain (a fair amount) and other GI stuff that does not make eating a good or easy thing. Right now I am not sure of all the ramifications of the GvHD of the gut. It can also effect the liver. The IPOP people are closely monitoring Nick's blood work for any early signs of problems. Nick must be hyper vigilant to any changes in his body and report any symptoms immediately. For now they are not treating the GvHD, but, if the symptoms worsen, they will have to treat. This will most likely involve giving Nick steroids and possible anti-rejection meds, which will once again predispose him to a greater risk of getting infection. GvHD is one of the major complications of having a BMT and depending on the severity of the symptoms can lead to very serious problems.

I need to turn the clocks back one hour...I wish I could turn them back a lot farther than that. I wish I could turn all of our lives back the way they were. I know that I cannot; and I wish I could begin to tell you how horrible that feels.