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.

Poem

"Ode on the Whole Duty Of Parents"

The spirits of children are remote and wise,
They must go free
Like fishes in the sea
Or starlings in the skies,
Whilst you remain
The shore where casually they come again.
But when there falls the stalking shade of fear,
You must suddenly be near,
You, the unstable, must become a tree
In whose unending heights of flowering green
Hangs every fruit that grows, with silver bells;
Where heart-distracting magic birds are seen
And all the things a fairy-story tells;
Though still you should possess
Roots strong consoling bark
To love and caress.

~Frances Cornford

Compound Interest

Long day.
Testing done.
Drunk on Fentanyl
That was fun.
Listened as the
Doctor spoke.
Tried to fix what wasn't broke.

Early signs
point to West
What will be results of test?
Could be good,
maybe great.
Moving forward, cannot wait.

Hanging, gliding,
slipping, sliding,
through the Weinberg,
life is winding.
Give a little, take a lot.
Keep your soul
That's all you've got.

Wheel and deal.
Negotiate
Borrow time.
What interest rate?
Heading home
to rest and play
Safe and sound
another day.

~bigD

Starfish

Lie on the floor on your back and stretch out your arms and legs in the shape of the letter "X" and you have the beginning of my modern class. The dancers know the exercise as "Starfish." It is part relaxation, part port de bras (moving the arms), engaging the center and breathing!
When we finish the arms, we roll on the floor like creatures on the bottom of the oceans. We roll slowly and languidly feeling the current carrying our bodies along until we run out of space. Then we roll back in the other direction until we find our home base and return to the starfish position. Very relaxing....

Not that I have my mind right, I guess I will leave an update on Nick. For now this will be a just the facts kind of post.
1. It was discovered that Nick has some kind of GI bug that comes from being on all the antibiotics. This is the cause of the belly pain and some of the nausea. He was started on
a new medication to get rid of the creature from the deep lagoon. After 24 hours on the med, he seems to be feeling a little better.
2. The other issue of concern was the CT scan that was done last Thursday. The results showed some changes in the small and large intestine, all of which could not be explained by the belly infection. Therefore, the doctors want Nick to have a colonoscopy to get a biopsy and check for signs of GVHD. Nick is scheduled for this test on Monday morning.
3. Because of all these developments, Nick transfer to clinic and the removal of his line were put on hold. (I think I already wrote this part)
4. Nick had to go back to IPOP on Saturday to get the once over....he got some IV fluids, some nausea medicine and a nap. He spent some time with Kate, which is good medicine all by itself.
Nick felt a lot better this afternoon with less belly pain and more energy than he has had in a while. He still has "the look" in the face, but, the doctors don't put much store in that. I, on the other hand, know that when I see that face, all is not well on one level or another.
5. Nick's counts today were OK, slightly down on the WBC and ANC counts, which could be attributed to fighting the gut infection that he has currently. He has no fever, thank goodness.

Once again, the road is long and "bumpy" and my shock absorbers are needing to be replaced.
Excuse me while I go roll over the bumpy road and find my inner starfish.

Troll Bridge

Today was a long day. Nick and I were up very early to head down to Hopkins. Even though Nick was supposed to be officially "discharged" out of IPOP by the end of this week, but, he has been having a lot of stomach pain of unexplained origin. This in turn has started another whole cycle of nausea and random vomiting.

I was glad to be going to IPOP today so Nick's NP (nurse practitioner) could figure out which troll was trying to come out from under the bridge this time. The bone marrow biopsy (the original intent for this visit) went as well as can be expected and actually took a back seat to the rest of the day. Another attending in a long line of random attendings who appear out of nowhere to offer their sage advice came in to look briefly at Nick. It was Dr. Kildare's (OPSEC) opinion that the Gleevac may be the cause of Nick's abdominal cramping etc. She was quite taken aback when I told her I would have to disagree with that assessment based on my 24/7 experience of living, eating and breathing with my son for the past five months. She sort of smiled/chuckled a little as she departed never to be seen again.

Fast forward several hours: the results of the CT scan of Nick's abdomen showed some potential problem areas. The current theories are either infection or possibly early GVHD. I can't face the explanation of GVHD and its myriad of complications, so maybe later for that epic tale. For right now, I feel like all the air has been sucked out of the room again. I want to cry and scream, but, I can't seem to muster the emotional energy to go there right now. They cancelled the removal of Nick's line for tomorrow, which makes me very sad as this was a milestone in my mind and I am sure it was for Nick too! The planned discharge from IPOP has been postponed indefinitely. Does anyone have a get out of jail free card I can borrow?

Nick calls this a bump in the road. I call it a pain in my heart.

I am tired of bumpy roads and bridges with trolls; even though you know they are there, they still scare the crap out of you when they jump out!

Sometimes

Sometimes things don't go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don't fail,
sometimes a man aims high, and all goes well.

A people sometimes will step back from war;
elect an honest man; decide they care
enough, that they can't leave some stranger poor.

Sometimes our best efforts do not go
amiss; sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen: may it happen for you.

~Sheenagh Pugh

Another Day

As always it is late and I have decided to update which always takes longer than I think, thus depriving me of more sleep, which I feel I don't need but, I know I do. Today I did many things, but, felt like I got nothing done. Nick had a sore throat this morning. In any normal circumstance, a sore throat would be a small blip on the illness continuum. For Nick....not so anymore. Upon inspection, we discovered yucky white thingy-whozits in there. Called IPOP...doctor told us to wait and see what develops. It is most likely a cold virus, but, that can still be bad for someone with a completely compromised immune system. I hope whatever it is can be nipped in the bud. Time will tell.

In general Nick has been doing very well and moving forward at what seems to me to be a very rapid pace. While all signs point to good right now, the problem with leukemia, chemotherapy and bone marrow transplants is the unpredictable nature of its many side effects and complications. Due to the nature of the beast, it is extremely hard to plan anything ahead as one never knows from moment to moment when some new glitch in the works may appear. On the positive side:
1) Nick's counts have been steadily rising, which is a good thing. He has not needed any platlet or blood transfusions as both of the numbers have been solid. Nick's white count and neutrophil count also are also rising, so his new marrow is trying to do its job.
2) Nick's days in IPOP are numbered because he is doing so well, he will soon be "discharged" down to the clinic level. This means that the level of care and monitoring Nick needs has decreased and therefore he is ready to move on to the next step in the process.
This also has a downside...see "downside" discussion to follow.
3) Nick will be getting his "60-day" bone marrow biopsy this week. This is a somewhat unpleasant procedure that all BMT patients must have throughout there recovery. This will be Nick's second bone marrow biopsy, but, this time he will have sedation! Then we will have to wait to find out the results for a week or so.
4) If all goes well, Nick may also be able to get his line out at the end of next week!! This is also a mixed blessing, but, the biggest positive is that the infection risk from the line will be eliminated.
5) Nick's appetite is good and the nausea and vomiting thing seems to have taken a hike! Now hopefully, if I can get him to just eat full time for a few months, he can gain back all the weight he has lost! Taste buds are still somewhat messed up but we are figuring it out slowly but surely, what tastes good and what doesn't.
6) Nick is off the majority of the medicines he was taking which is great! The less stuff to muddy the water and make his liver work overtime the better!
Now for the "things that are still of concern" list:
1) According to the nurse who did the "discharge" teaching, Nick's immune system is like that of a newborn baby. He must remain super vigilant to keep from getting sick! His new immune system though better (i.e. counts are slowly climbing) is not by any means at full capacity. Basically his force field is very weak and easily penetrated by all manner of bacteria, viruses and fungi. All of the protection provided by his immunizations have been wiped out. He will have to get all new shots at the one year mark. In the meanwhile, he can get chicken pox and measles just to name a few. With cold and flu season about to start, this is all the more reason that Nick needs to maintain a low profile and minimize his exposure risk.
2) Nick has to stay out of the sun as any exposure to the sun may trigger graft vs. host disease of his skin, which can be a very bad thing.
3) At the 60 day mark is when signs of chronic graft vs. host disease can begin to appear. GVHD as it is called can range from mild to severe. It is basically what happens when the donor cells start to attack the hosts body thinking it is foreign (because to the donor's cells, Nick is foreign!)
I pray to God that Nick does not get this as it can be very serious and can attack many different systems/organs of his body like the skin, the GI tract, the liver, the heart and more. The treatment for GVHD is also not pleasant and involves lots of steroids and sometimes anti-rejection drugs, which come with their own set of side effects and complications. Always with the side effects and complications. GVHD is one of my BIGGEST fears right now.
4) The leaving of the IPOP has a downside to me in that Nick will no longer be getting the close follow-up that he was getting in the IPOP (which on some days was also debatable even in IPOP) When you get busted down to the "clinic" you are considered to be outpatient. Nick will no longer be followed by the BMT attending or anyone in IPOP for that matter. He will then revert back to Dr. Fazi and Dr. Caramel, who are medical oncology doctors. We like both of these doctors, but, Nick won't be seeing them as often, which is a good thing as long as Nick is doing well.
5) Once the line is out, Nick will have to get stuck for all of his lab draws and treatments when needed. Hopefully, only once a week and then once every two weeks for a while then ??
6) Nick's liver enzymes were still slightly elevated, so I am hoping these numbers come down this week.
7) Nick had to start back on his Gleevac, which is the "targeted-therapy" medicine for the CML that keeps the Philadelphia chromosome from rearing its ugly troll head. Unfortunately, the Gleevac is strong stuff that causes hair loss and counts to drop and may also trigger GVHD! The doctors were just back from some conference and the new thing is to start patients back on the Gleevac as soon as their counts return, so they wanted Nick on it right away. Now we have to wait and see how this will fit into the picture. Another question, why the urgency to get him back on it? What is the new data?
8) There were rumblings about other tests that shall remain nameless right now as Nick does not want to ever have this test again. Therefore, not even going to discuss it now.

And I haven't even begun to address the emotional and psychological issues that go along with all this. I found a very interesting article about just this subject as it pertained to BMT patients and their caregivers right in the magazine pile at the IPOP the other day! I will save that for another post as this one is way too long already!

I guess I just want everyone to understand that there is a long, long, long, way to go and many obstacles yet to be moved before this is over. (Ganesha do you read me?) Nick really needs to have the continued support of all his friends and family. Of course, this gets back into the emotional stuff once again, but, now is when this really comes into play. The social isolation and the restrictions due to concerns regarding infection are really tough on Nick (or at least that is my opinion). Now more than ever Nick needs his friends to stay in touch so he doesn't feel like he is out of the loop with all of his peers and friends anymore than necessary.

How difficult it must be to feel like everyone you know is moving on with their life. They are busy working and doing what normal twenty-somethings do, while Nick is stuck dealing with quite a severe illness. So please keep emailing, face booking, writing, calling and VISITING! It is OK for adults to visit as long as you are not sick and/or you haven't been recently exposed to someone who has been sick. Flu shots are strongly urged for anyone who will be around Nick on a regular basis...we all have to get ours! Sorry that this post has been so long and drawn out and completely lacking in creativity. I am just too tired to be creative right now.

A good laugh and a long sleep are the best cures in the doctor's book. ~Irish Proverb

How do people go to sleep? I'm afraid I've lost the knack. I might try busting myself smartly over the temple with the night-light. I might repeat to myself, slowly and soothingly, a list of quotations beautiful from minds profound; if I can remember any of the damn things. ~Dorothy Parker

A Bad Dream

Well yes...that is a picture of Captain Nick! Looking at this picture makes me smile and makes me sad. Nick doesn't quite look like this picture anymore. He is still my same sweet boy, but, now he is skinny and frail and bald and sad and I cannot fix it! As a parent, I cannot begin to tell you how frustrating and horrifying it is to know that you cannot save your own child from danger. You have to depend on people in white coats who breeze through cancer centers as if they are in a shopping mall. They care on some level, but, not the way we do. They don't love Nick like we do.

I have not written much of late as I have been overwhelmed with so much of what has been going on. I feel that I am in an emotional limbo right now. I waffle between feeling nothing and feeling too much. While Nick is doing OK, I have been unable to feel in a celebratory mood. I feel like I am trying too hard to put a good face on things at the moment and I am tired of it. I feel like I have fallen into the rabbit hole and I never liked Alice or her shitty wonderland! (Note: A far worse expletive has been deleted for those with sensitive sensibilities - although I have no idea how long I will remain in this frame of mind so beware of four letter words and other harsh realities to come and that would include the music as well - consider this your first and final warning on the subject.) Nick keeps telling me I need to go to "anger management" classes? I don't get angry with Nick...I do get angry about other stuff . I do have anger about this subject and therefore have displaced said anger onto unsuspecting inanimate objects, stupid drivers on Orleans Street and whatever or whomever may cross my path.

Yes... I have anger and I don't have anywhere to put it! If there is a shrink out there who has an appropriate receptacle, please feel free to UPS it to my house ASAP before I explode with the rage of a thousand suns! I really can't begin to put what I am truly feeling in this blog right now for fear of offending someone. I am doing my best to hold it together, but, all I want to do is take care of Nick and NOTHING else. I feel like I am clinging to my sanity by the smallest of threads. Is this normal? I don't know. Why am I feeling this now? I don't know. Why does Nick have to go through all this? I don't know. So many questions with no answers. Is the worst over??? I don't know. Does anyone?? The answer to that question is NO!

And all I can think is that if this is what I am feeling, what is Nick going through? I want to help him, but, it seems in this he does not want my help. Maybe with time, the answers will become clear. Right now, the picture is blurry and my eyes will not adjust.

When did everything get so hard? I long for my old life. I know Nick must feel that way too. If only this were a bad dream and we could all wake up and find that someone was playing a cruel joke. Knowing what we know now, we would forgive them.

Light The Night Walk

Well today has been a great day! Zeke arrived to take Nick to the IPOP. Glenn was off fishing with Uncle Steve and I was at the studio. It wasn't long before I got an excited call from Nick. Are you ready? Nick's neutrophil count was 2070!!! Hallelujah and saints be praised. He called from Kate's to tell me the good news and to say he was happy would be an understatement.

While everyone is doing the happy, happy, joy, joy dance, I want to let all my faithful readers know that Nick & I will be participating in the "Light The Night" walk to be held at Ironbirds Stadium in Aberdeen on Saturday, October 25th. This will be our first walk of many!

The donations from the walk are used to support the work of the Leukemia and Lymphoma Society. Nick and I have found this organization to be very helpful in providing information and support. If anyone would like to donate to support this wonderful organization, I have provided a link to my sponsor page. I know so many of you have already donated to Nick's fundraiser, so please do not feel that you need to give again. If you wish to donate, please remember that NO DONATION IS TOO GREAT OR SMALL...every dollar helps!

The link is www.active.com/donate/ltnBaltim/2426_dancindianern I am not sure how much of the walk Nick will be able to do, but, he is really looking forward to it. When you go to the walk, the participants all carry balloons...red balloons are carried by supporters (friends, family members, caregivers, coworkers), white balloons are carried by cancer survivors, and gold balloons are carried in memory of loved ones who did not survive this disease.

Here are some facts that I found quite daunting, even as my son has become one of these statistics:

• More than 823,000 Americans are living with blood cancer.
• Leukemia is the leading cause of cancer related death among children and young adults under the age of 20.
• Every five minutes someone is diagnosed with blood cancer.
• Every ten minutes someone loses the fight.

If anyone would like to walk on Nick's team, please feel free to contact us ASAP! Any and all our welcome. In future years we will be more organized. For now we are newbies to this whole experience, but, I know we will be walking with renewed energy in our step and joy in our hearts for the gift of life that Nick has been given. Even though Nick is still fighting his battle, we can do our part to see that no one has to take a step on this journey against blood cancer ever again!

Holding On

Have the leaves started to change color already? It cannot be October already...the month of falling back and trick or treat. Has it really been almost five months since Nick was first diagnosed and almost two months since his BMT? Tomorrow will be Day #43 post transplant!

Nick has been showing slow but steady improvement in his appetite, his energy level and even his color. He has been eating better and feeling stronger each day. Nick's counts have also been showing improvement with each passing day. His last visit to the IPOP was on Thursday and his neutrophil count was up to 693! The fever has been kept at bay with continued IV antibiotics around the clock and the anti-fungal by mouth. The Vancomycin was stopped a few days ago and Nick's body seemed not to mind. If he continues to do well, they will take other medications off one at a time and see how he does. I pray that these are all signs that he has really started to turn the corner, but, I am still holding my breath for a while longer.

Nick was given a brief reprieve this week and we were actually "off" from IPOP this past Wednesday and Friday! It was a nice break from the daily routine of driving back and forth to IPOP and we both got to sleep in on Friday morning! The Thursday appointment was very long, due to lots of patients and not enough nurses. Nick was really only there to get blood drawn, but, we still had to wait around for almost three and a half hours before we could finally head for the hills.

The weekend brings a new set of "Mom worries" as Nick is off to the IPOP with friend Zeke and then to Kate's house for the weekend. It is so hard for me to let go of my patient. I only want him to be safe. Nick & I debate the pros & cons of this decision, but, ultimately I am over ruled. I want him to be free, but, I also want him to be safe. I will never be able to make him understand this and so I must accept and pray that all will be well while he is back out in the world. I trust Kate to take good care of him for she knows all that he has been through.

“Our strength grows out of our weaknesses” ~Ralph Waldo Emerson

“Some people think it's holding on that makes one strong- sometimes it's letting go.”

A+

Time to do the happy dance again! We got some very good news today. The results of one of Nick's tests came back today. The alphabet soup name for the test is "rflp," which stands for Restriction Fragment Length Polymorphism! I have no idea what all that means. Bottom line: the test tells how much of Nick's blood is genetically the donor (testing DNA) which is also known as chimerism.

I am so happy to report that Nick's result is 100% DONOR!!!!!!!

This is a huge step in the right direction and such a positive finding for Nick! The nurse practitioner told us that this is as good as it gets in terms of "engraftment" of the donor marrow in Nick's body. She said if this was a graded test, he would get an A+. Now it is official...Nick has two DNA's (so very weird to me). His blood/marrow is genetically all donor (the "new and improved" without leukmeia Nick) and the rest of him is genetically the same Nick we all love!

Because Nick's counts have been low, the doctors have been somewhat worried about his graft and they have been waiting for the results of this test to see what further testing, if any, needed to be done. If Nick had been 70/30 or less, sometimes zero donor, that would have been very bad news and possibly indicate signs of graft failure. (This has been hanging over my head for a week or so now and thus why I have been really sad and worried.) NOW I AM GREATLY RELIEVED AT THIS WONDERFUL NEWS! This means that Nick is 100% engrafted and therefore, he does not have graft failure.

Nick's counts are still low and his ANC in particular is still being very stubborn about showing signs of coming back up. Today his platlets, blood count, and white cells have all shown a little bump so that is a good sign that things are going in the right direction. These counts in combination with the rflp show that Nick is doing OK. The new attending Dr. Swisher (OPSEC) was even considering doing a bone marrow biopsy today to check the "chimerism," in the actual marrow; but, Nick did not have to have it done today because of the rflp result!

Nick must continue on all of his antibiotics and anti-fungal medicines until his ANC starts to trend consistently upward and gets over a minimum of 500. Until then, he is still at high risk for infection. I am hoping he will show signs of count recovery throughout the week.

Nick has been in good spirits and feels so much better since somehow we have managed to get a handle on the N&V. He is eating something now and has a little more pep. Nick still has a long way to go, but, today is a great day! The troll is pouting under the bridge and another obstacle has been successfully overcome (thank you God & Ganesha).

I also want to say thank you to EVERYONE who has been supporting Nick (and Glenn, Sara and I) through this process. Your prayers, good thoughts, cards, letters and phone calls let him know that he is not forgotten and that he is well loved by so many. The fundraiser was a rousing success and Nick has been a little overwhelmed by the generosity and kindness of family, friends and strangers alike who have come to help in his hour of need. THANK YOU SO MUCH from the bottom of my heart, which today is dancing for joy!

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo F. Buscaglia

Dance Therapy

The sound comes to me as I round the corner to the elevator. The music is beautiful and yet, so incongruous in this place of somber and hushed tones. There is a grand piano in the lobby of the Weinberg Center. Every now and then someone will be playing. I always wonder if it is a former patient or family member who has returned in hopes of bringing some peace, some solace, some joy to all those who enter here.

The music is soothing and comforting to me. It draws me like a moth to a flame. I wish I could just begin dancing in the lobby the way the musician is able to sit down to the piano and begin playing. There is an open space that cries out for movement. Would anyone notice? Would they think I was crazy or lonely or forlorn?

Many say that dancing is a mirror to the soul. I am afraid.

What will happen when they see all the pain and sorrow come spilling out onto the ground?


“If you are going to walk on thin ice, you might as well dance”


“Those who hear not the music think the dancers mad”

The Mickster

Hey everyone out there in the blogosphere. Sorry I haven't posted in a few, but, I have been tired and sad and busy running up and down the roads with Nick.

My big 'ol Top Cat, "Mickey" passed away the other day. Sara & I miss him so much already. He was named after Mickey Mantle and he has been with us for fourteen years. He had been ill and I had just taken him to the vet to find out he had some serious heart problems. I knew he wasn't doing well and it was just a matter of time, but, he died alone here at the house, while I was off at the hospital. That made me very sad. I guess it was just a trigger for me to let out all the sadness and frustration I have been feeling in other areas of my life. It is funny how attached one can become to one's animals. Nick told me that Mickey is in a better place now, "kitty heaven." I'm not so sure. I already have people offering me kittens, but, I can't have any new animals in the house until Nick is well.

Nick has been having a really rough time of it these past few weeks. Since he has been home, Nick has been feeling really down in the dumps both physically and mentally. This latest setback with the fever and hospital admit has hit us all hard and while he is still doing well, there is for me a bit of uneasiness that makes me wonder...are we still headed in the right direction? Or, have we veered off the path and we will soon be encountering that ugly troll guy! Nick has not been able to eat in days. His weight is down to 154 pounds. Nausea and stomach "pain" have been plaguing his days of late. None of the doctors or nurse's have anything to offer on this and the anti-nausea meds don't really seem to be helping. In the meanwhile, he must continue on his antiobiotics and the anti-fungal (AmBisome), which are extremely hard on his system. He tells he doesn't feel well several times a day and I just don't know what I can do to help him get over and through this time.

After his discharge on Saturday, we returned to IPOP bright and early on Sunday morning to discover that Nick's ANC count had dropped in one night from 600+ to 60! No one has been able to give us any kind of a good explanation for this drop in his counts. His other numbers are stable, but, his liver enzymes are also elevated. The nurse practitioner that is filling in for our regular NP was concerned that another infection was causing Nick to "chew up" his neutrophils. She sent Nick for another sinus CT which was unchanged (although there is an area of concern that no one mentioned to us because "they" think it is nothing). They drew CMV titres to see if that is what is causing the problem, although he has been negative for CMV all along. The only good thing is that Nick has been without fever for several days now. We continue the antibiotics around the clock at home.

I want Nick to be well and be happy. It is so hard to see him go through this right now. I have to keep reminding myself that it is only Day #34 post BMT and that is still so early in the process. I just want him to be able to EAT so he can start getting his weight back up and get some energy. I truly feel that this is a big problem right now as he is unable to keep much down and his stomach is queasy all the time. Today his entire food intake consisted of about 9 tater tots....literally. He is trying to drink to stay hydrated (his creatinine was also elevated today, could be from the meds or lack of proper hydration) but, even getting fluids in him is tough. He is so tired all the time, he sleeps 12-16 hours/day; which doesn't leave many hours for eating!

I am finding the situation at IPOP to be very frustrating because there is no consistency of care there. We seem to have a different nurse every day and never see a doctor. There doesn't seem to be a rhyme or reason to what they do...while Nick doesn't like being inpatient, I feel the care is better and more encompassing. Anyway, I have to go pack up for tomorrow. I will try to post a more coherent story tomorrow.

What Is A Cat?

Gentle eyes
that see so much,
paws that have
the quiet touch.

Purrs to signal
"all is well"
and show more love
than words can tell.

Graceful movements
touched with pride,
a calming presence
by our side.

A friendship
that will last and grow -
small wonder
why we love them so.

Author Unknown