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.