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.