Balancing Act

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see Life with a clearer view again.” Alex Tan

Life is a precarious balance right now, one misstep and everything may come unraveled. Nick is still on the breathing machine, but Monday was a quiet day and there were no untoward events. Nick had another chest CT scan done on Monday. The critical care transport team took him to the Weinberg scanner (not the one that is a mile away) and Nick did very well. Nick has actually been very awake, despite getting mega amounts of sedation. He is not always able to remember everything, but, he is able to comprehend very well. Nick has been communicating by writing on a pad of paper. This takes a lot of energy and time but he's doing it. He is fully aware that he is on the breathing tube but he doesn't understand everything that has happened in the past five days that have led him to this place. At times he wakes from sleep and he is confused and a little dazed, but, it doesn't take long before he gets oriented and is calling for his pencil and pad. He actually wrote the he wants the "full run down" on the last few days...I told Nick that I will gladly fill him in when he is off the sleepy medicine so he can actually remember what I tell him. And there is so much, it is just too overwhelming to hear while you are loopy on meds that won't let you remember.

The CT scan did show an area of schmutziness in the right lower lobe. This could be infection or old junk that is stuck down there. So tomorrow the pulmonary doctors will be looking down into Nick's lung with a scope to see if they can get some of it out of there to open up this lobe of the lung and send specimens for testing. This could be what is keeping Nick from getting off the ventilator. My theory is that when he had the seizure he aspirated into his lungs and that has now turned into a pneumonia. Regardless, if it is a pneumonia, they may be able to get more specific on the type of bug that is causing it and treat it more aggressively. This bronchoscopy will be done in Nick's room and should only take twenty minutes or so from start to finish. The doctors don't seem to be too worried about Nick undergoing this test, I hope and pray they are right. I guess there is a chance that they might try to get Nick off the tube tomorrow, but, it is too early to tell yet. We will have to see how things go with the bronchoscopy procedure. What they find and how he tolerates the scoping will determine how fast things progress going forward.

In the meanwhile, Nick has been talking about all the food he wants. He has been writing so many things that he wants to eat like doughnuts (from Fractured Prune), coffee, oyster stew (who knew Nick liked oyster stew??), Chipotle and more. Tonight, it broke my heart (and made me cry all the way to the car) when I had given Nick a kiss and said good night when he signaled that he wanted to write. He asked me to bring him an "everything bagel" for the morning. I guess he forgot that he can't eat while he has the breathing tube in and I guess he has had it for so long, he is almost used to it in some crazy way. It is so sad...cause in a way, I think the ventilator helps him breathe easier and he is feeling hungry, and he is on a bunch of loopy medicine, so it makes perfect sense for him to be asking me to bring him some breakfast food. And it makes me so sad that I can't do that for him right now. Soon, please God, soon.

It is late and I must go to bed. Tomorrow will be another long day. I just wanted to let every one know that Nick is still fighting! He seemed in a little better place emotionally, although, I can tell he is still very anxious and still very tired of this whole breathing tube thing. I will try to update again soon. In the meanwhile, thank you to everyone for you continued prayers, support and good vibes. I had some wonderful moments with Nick today. I am thankful for every moment I get to spend with this wonderful man who is my son.

“The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot

Holding Tight

Nick has been wanting to return to the beach for so long now. I chose this picture to remind me of the future we hope to spend together.

Yesterday (Saturday) started well. Nick was allowed to come off some of his sedation in hopes of taking the breathing tube out. His blood gasses were good and he was able to stay very calm while they did all their testing to see if his lungs would tolerate having the breathing tube out. His CXR showed that his right lower lobe had re-expanded and all seemed right with the world.

Despite the massive quantities of sedation medicine, Nick was able to open his eyes, nod his head in answer to questions and even write his needs and questions on paper. He seemed to understand that he was back on the machine, but, of course, he did not understand why or what happened to him. Nick was listening to some of his favorite music, the one I just put on my playlist by Old Crow Medicine Show is one he really enjoys! He was able to communicate with me and he knew when his Dad and Kate arrived later in the afternoon. He occasionally got frustrated when we could not figure out what he was trying to explain. While it was wonderful to know that our Nick was still alive and well after the seizures and the Tacrolimus toxicity, I could also tell that he was very sad and upset to be in such a helpless position. To see him suffering this way, well, it just broke my heart into a million pieces.

Suddenly it all went sour and for no reason that anyone can figure out Nick's oxygen saturation levels started to drop. At first, the sats were in the 89-92% range (normal is 97-100%) but, the number began to plummet downward and soon Nick was feeling that he could not get enough air and began to get anxious. I cannot tell you how many times Nick has had to go through this horrible experience, but, it has been WAY TOO MANY! The only way I can describe is to say that it is terrifying not to be able to get your breath and it is heart wrenching to watch this happen to anyone, let alone your child. As Nick's sats continued to drop, the doctors and nurses hurriedly started to sedate him and try to get oxygen in him via the ventilator and then through bagging with an ambu bag. Nick's sats dropped so low, I was terrified we were going to lose him right then and there. He was already on 100% oxygen at this point and his lungs were not bouncing back. His blood gasses were very bad, but, somehow his heart rate and BP remained stable and his blood pH did not drop too far. It took the better part of two hours for Nick's sats to return to normal.

A CXR showed possible worsening infiltrates and/or an inflammatory process?? It may be that he has an infection and/or something called ARDS (acute respiratroy distress syndrome). Whatever it is...it is not good. I have shed so many tears, the depths of my sadness cannot be measured. Glenn & I tried to stay at a special housing unit that is right across from Weinberg, but, there were no rooms. So Glenn is spending the night and I came home. I am praying that I do not get a phone call in the middle of the night tonight. I don't think I will be able to bear it if anything happens to my precious son. Everything brings reminders of how much he has been through and how much I love him. I cannot begin to describe the despair that I feel at this moment. All the hopes and dreams we have been holding onto so tightly seem to be slipping through my fingers like grains of sand. Sand from that beach that seems like a memory from so long ago, I don't know how we will ever make our way back to the place in time.

Testing of Faith

Hello everyone...sorry that I haven't posted in a few days, but, things have been very busy and yesterday Nick took a sudden turn for the worse (seemingly out of the blue, but, not really.) I put this picture up to remind me that this is the Nickolas I am fighting for every minute of every day! The handsome, healthy, strapping young guy with the content smile on his face. It breaks my heart every day to see the shell of his body that is left to continue this fight. But, I know his heart and his spirit are still in there...and I will fight for him when he cannot.

I will put the bad news out here in short form...if you want details read on. I know I can be long winded, but, it also helps me to have somewhere vent. So if you don't want to read all that stuff
you can just stop and wait for the next update. Nick started having seizures yesterday! He had several episodes of "mild" focal seizure activity, which prompted an emergency jaunt to CT scan, which showed nothing! Upon returning to his room, he had another episode. During the seizure, Nick wasn't breathing well and he was had to be prompted to breathe. His heart rate dropped a couple times and his color was horrible. The doctors INSISTED HE GO TO MRI, despite my STRONG objections and feelings that he was not stable to travel to the MRI scanner which is about a mile or more from the Weinberg building. I wanted the "critical care transport team" to take him and this team was not available at that moment. Instead of waiting, the doctor decided that Nick should go down to the bowels of the earth with a resident and a nurse who was the "shift coordinator." Glenn went and carried equipment that I asked to be brought (like suction and emergency bag) and I went, unfortunately as the second nurse, bed pusher/puller, elevator holder, monitor watcher etc. Upon arrival at the MRI scanner, Nick began to have another more serious seizure! This was so scary and horrible to watch! They had to give him Ativan to stop the seizure and then his breathing got so low....soon the CODE TEAM was being called. The anesthesia doctors decided it was necessary to put the breathing tube back in due to Nick's extremely low ventilation. A random nurse tried to make me leave...well, I guess you can figure out how that went...Glenn & I stood there in horror praying that our son was not going to die this way, while an Episcopalian minister tried to distract and comfort us.

The MRI could not be done now because they did not have a special ventilator that can go in the MRI. Nick was brought back up to the infamous "ROOM 8," where patients go who are more critical or need more watching. We hate this room, it is cramped and small and it is ridiculous that a room this small is the critical room! Sorry sidetrack...

Nick spent the night on the breathing machine and he is currently off to MRI for the past couple hours! It takes forever because of all the precautions that must be taken. No metal of any kind can go in this scanner....long story.

The latest theories on the cause of all this...toxicity from a medication that Nick has been on for a while...his Tacrolimus (which is his anti-rejection drug). Apparently it can cause this thing called "PRES," which stands for posterior reversible encephalopathy syndrome." The key word being reversible. Basically it cause swelling in and around the white matter of the occipital lobe. It can also be cause by high blood pressure, which Nick has not really had until just the past few days. Although, his pressure has been elevated more since the surgery.

They also think that Nick has this thing called TTP, which stands for thrombotic thrombocytopenia purpura. This is something they think is an autoimmune response, possible caused by the Tacro toxicity, that cause the body to chew up red blood cells and platelets. This explains why Nick has been dropping his counts since the surgery, which I have been telling them all along is not like him. Surprise, they have not been listening. Also, since the surgery and even before, Nick has been having these purple spots all over him and pettichiae, also pointed out to every doctor that comes to his bedside, also ignored! This would explain all the bruising that Nick has been having and worse so now since his surgery is over. Usually this must be treated with a blood "exchange" transfusion and/or plasmaphoresis (different than his photopheresis). This would require Nick to have a huge catheter put in his neck or groin and carries lots of risk due to his low platelets and bleeding. The doctors are waiting for the results of the MRI scan before they make any further plans. Nick has been placed on an anti-seizure medication, his has had an EEG and he has been seen by a neurologist last night and today.

Nick seems to have stabilized somewhat. As far as I know he has not had any more seizures. He spent a quiet and sedated night on the vent. Nick had a good nurse last night in whom I have great confidence. Also, Dr. Frosty was the fellow on call, so at least he knew Nick and his long history.

I have had an uneasy feeling for the past few day, nothing I could put my finger on, but, I just KNEW something was not right. Nick had been having some signs that he was having some memory issues and needing things repeated. We attributed this to his pain pump and his surgery. The chest tube actually came out on Wednesday and the last of his tube (the pee tube or Foley catheter) came out yesterday. Nick was doing OK, but, everything wasn't quite right. Yesterday, when PT came to work with him, he was having visual disturbances, changes in his visual field and seeing things like "baseball players" and "slot machines." He had obvious changes in his field of vision and was even having some trouble writing his name. This was all before the seizures started. Anyway, that is all I can manage to report right now. To say this has been hell, is an understatement. I feel like I am in that numb place where I cannot feel anything. I did have a good cry while waiting in the MRI for them to get Nick stabilized. I am very scared, as I don't know how much more this poor guy can take. He is still in there for he tries to wake up and pull out his tubes, he responds to his name and this is all good. The doctors hope to try to get him off the ventilator today. Although, I am not sure if this will actually happen. For now, Kate & I sit here waiting and praying for continued miracles on Nick's behalf.

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing (James 1:2-4).”

“No one tests the depth of a river with both feet” African Proverb

Stained-Glass Tears

Nick continues to slowly improve from his biopsy. Today has been quiet. Nick spent the day resting and getting his bearings after the 48-hour marathon that was Friday and Saturday. Nick did not get much sleep last night so he has tired eyes. He has been using his pain button to keep his pain under control and this is also making him a little sleepy. Tomorrow will be a busy day for Nick as he may have to go for a CT scan and he might get his chest tube out. This would be a huge step in the right direction for sure. Once that tube comes out all of the others will fall like dominoes.

Last night was a little rough for me when I got home. I felt like I had gotten a little carried away with myself on my post...thinking that somehow he was going to be miraculously cured. Once again the gravity of Nick's situation hit me hard and the unfair reality of it just always makes me cry. Tonight I hope to get home a little earlier for I feel that lack of sleep is also playing into the volatility of my emotions. It takes an immense amount of emotional energy to reign in all of the emotions one experiences in a situation like this...I have been doing that for over a year now. It is like when the storm clouds start to roll in and the thunder starts to rumble in the distance, the signs are there that something big is about to jump off. When the rain finally comes it is bound to be a gully washer, but, when it is over, the sun emerges and hopefully the soul is cleansed and sometime you might even get a rainbow! The song reminds me of a more gentle rain...the kind of rain where you can sit on your porch swing and feel the breeze and listen to the music of the rain falling gently like tears from the sky.

Circle of Love

So this picture is entitled, "Circle of Love" and I feel that right now Nick is in this circle, surrounded by family and friends, in love, hope, and prayer. So many of you have been praying for Nick and as my Mom says, "storming heaven." For the moment it seems those prayers have lifted Nick over another huge obstacle. I think if Nick had these two adorable cats, he would name them "Huff" and "Puff." Reminds me of the two little mice in the cartoon called, Pixie & Dixie.

Forty-Eight Hours...

The past forty-eight hours have been hell and I have never experienced such fear and emotional pain in my life. So let me start at the beginning....

Yesterday, Nick has to spend the entire day "waiting" to go to the OR. Glenn, Sara, Kate and I were at his bedside the entire day. (I had spent the night and therefore, I was already quite exhausted.) It was a time for quiet reflection and many of Nick's hospital buddies came by to wish him well and let him know they would see him on Monday. Nick was still breathing hard on 40% oxygen via high flow face mask. He was so pale and his hematocrit was low...yet they didn't want to give him any blood. I know he was nervous and scared...who wouldn't be? The anesthesia doctors came to see Nick and they were both very nice. The attending anesthesiologist was VERY concerned and expressed this to me...it was not easy to hear how worried she was that Nick was going to have a very rough go of it (code for he might not make it through the procedure!) The anesthesia doctors actually came to pick Nick up and take him to the OR...this is also very unusual, but, this is how worried they were about his breathing status.

Later that night...
Nick returned from the OR directly to his room. He did not go to the recovery room. The doctor came out and spoke to us briefly (such an anti-climatic feeling to such a potentially disastrous operation). More on the findings later in the post. We then proceeded up to Nick's room, where we found him on the breathing tube (and ventilator) for the night, quite agitated, HR and BP were off the charts (so much for the plan to keep him well sedated and pain free!). Nick's sedation had to be adjusted all night...he would waffle between being completely out of it and asleep to roaring back into semi-consciousness, trying to sit up, pulling at his line, trying to push the breathing tube out of his mouth with his tongue, trying to get the bite block out of his mouth, looking around like he was awake (but, he was drugged up majorly) eyes rolling in his head, trying to talk and mouth words to us (you can't talk at all when you have a breathing tube in your airway) and generally being agitated. Nothing we said or did seemed to get through, he was a crazed madman. At one point his arterial line became a victim of one of these agitated episodes and had to be replaced. About ten sticks into his artery later, they finally got one back in! He needs this line to draw what are called "blood gasses" to check how his breathing was doing on the breathing machine.

A Leap of Faith and Trust Your Cape
I cannot begin to describe how hard it is to watch this process. Add to that my already depleted emotional and physical state and you have a recipe for disaster in terms of emotional turmoil and fragile psyches. All of us were going through our own personal hell! Each of us trying not to show how deeply we were hurting, each of us taking our turn at shedding tears of pent up anger, frustration, and sadness. Each of us trying to comfort the other. Before long it was time for Nick to head off to the OR. Kate and Sara gave their hugs and kisses. Glenn & I walked beside Nick's bed all the way to the OR door. There we had to say all we wanted to say to Nick in 30 seconds or less! Nick was so brave and yet, I know he was so scared. Walking away from those OR doors was so hard...it was like someone was taking my baby away from me. I did not want to give him up into the arms of strangers and yet I had no choice. Now it was in the hands of a higher power to watch over my son and keep him from harm. In this I could do nothing to protect him. As Nick said to me in conversation about the biopsy procedure..."I guess I will have to take a leap of faith and trust my cape." Nick likes the song "The Cape" by Guy Davis. I would put it on my playlist but I can't find it. Check it out. It's a cool song.

Fast forward to Saturday, June 20th sometime after 2AM....
The doctors finally were able to get Nick on enough sedation to keep him calm and free of pain.
Glenn spent the night and I went home to get some much needed rest and sleep. When I returned Saturday morning around 10AM, Nick was sleeping and doing all the breathing on his own with some support from the ventilator. Throughout the day, they weaned his sedation meds and then they started decreasing the dosing on his pain meds in order to try and get him off the ventilator. When trying to get someone off a breathing machine there is a fine balance between sedating to control pain and not suppressing the breathing.

Communicating Important Stuff...
As each hour passed, Nick became less sleepy and more aware of his surrounding. He was able to nod yes and no to questions and communicate with us by writing on a piece of paper. At one point, Nick shook his hand to indicate he wanted the pencil to write something, we all gathered around the paper trying to figure out what he was going to tell us....he was in pain, he couldn't catch his breath, he wanted to get the tube out...something of earth shattering importance. So what does Nick write on the paper.....SOCCER! He wanted us to put to soccer game on the the TV!!!! I didn't know if I should laugh or cry! Later in the afternoon, he did the same thing with the Oriole game! (Leslie, I don't know if you read my blog, but, this part of the story made me think of Kevin!)

Meanwhile back at the ranch, the op tempo on Weinberg today was extremely high. We kept getting reports from our nurse that things were "really busy" and the doctors were not able to get Nick's breathing tube out yet. The nurse also said if it got too late, Nick might have to wait until tomorrow! Well, that did not go over too well with any of us, so we kept hoping that things would quiet down and the doctor would be available to attend to his "other" patient. Nick continued to wake up very nicely. He was calm and cool as a cucumber. He figured out a way to go to his happy place and not let the breathing tube bother him too much. We were able to untie the restraints that were holding down his arms from the crazy man the night before. Nick did not like having these restraints on but they were for his own safety. Now he was lucid enough to know he must not pull on things. So he was content to be free to scratch his nose, wipe his eyes, and just move his arms more freely. Kate, Sara and I stood vigil at the bed (we sent Glenn home to sleep) to make sure Nick stayed away from his breathing tube. Nick wrote that the breathing tube and bite block were "a pain in the ass!" Later, he woke and wrote...."What's going on?" "It has been 90 minutes. When is the doctor coming?" It was now 7PM and I was not about to let them put Nick back in la la land for another night. He had passed all his breathing tests with flying colors, his pain and sedation meds had been cut way back and he was ready. DAMN IT! TAKE OUT THE TUBE ALREADY! Just then, a respiratory therapist came in and said the doctor gave her the go ahead to get the tube out. In a matter of minutes, Nick was off the breathing machine, the breathing tube was out and he was comfortably breathing completely on his own, with the well familiar green oxygen mask back on his face!! YEEEEAAAAHHHHH!!!!!

What's next?
It is amazing that all things went so smoothly. Also, I forgot to mention that Nick was able to have the biopsy with just the scope. So they didn't have to make the large 8-12" incision in the side of his chest that they thought they might! This also helped decrease the amount of pain which ultimately helped Nick tolerate the pain level with less sedation and therefore, get off the ventilator.

Now Nick is awake and watching TV, eating some ice chips and actually breathing very gently. I don't quite understand why his breathing so easy but I am not going to question it. Perhaps the sedation is helping with something, but, it doesn't make any sense to me. For now, I will take whatever good news I can get and enjoy the hell out of it. There is still a long way to go. The next hurdle is getting the chest tube out and controlling the pain until that happens. The results of the biopsy won't be back until Tuesday at the earliest, so it will be a waiting game until then. If Nick continues to do this well on his breathing, I might have to concede that a miracle has occurred. Nothing about his biopsy was supposed to "fix" anything. I am not going to get to carried away, but, this is just a little strange right now. Time for me to sign off. It is late and it has taken me forever to write this post. Still tired and there is a long week ahead. Please keep praying that they find something that will help Nick get better!

Big Smile Nick

I wish I could make this picture bigger so everyone could see the beautiful man that is my son. This is my Nick...tall and handsome, strong and healthy. Nick with his crazy, curly, impossibly thick hair. Nick with a big smile...happy and living every moment with joy and happiness.

As I sit here in Nick's dark room at 4AM in the morning, unable to sleep because there is nowhere to lie down that does not create pains in every joint I own, I still cannot believe that this is really happening to my son. Now he sleeps, his only solace lately. And yet, even in sleep his breathing is labored. You can't hear it, but, you can see it. The chest rising and falling with jagged stutters and stops. Not at all the smooth in and out we all take for granted every day. The breaths per minute always too high, still wearing that damned plastic oxygen mask. Still fighting to stay alive, valiant even in sleep. Yesterday morning and tonight, I find him suddenly slowing his breathing, too shallow, too slow, then his heart rate begins to go down way lower than it has ever been in recent months. There is a name for this kind of breathing, it is called Cheyenne-Stokes respirations. Nick sleeps right through this rhythmical high and low breathing, seemingly unaware of the fight his body is having to keep precious oxygen pumping to his body. Why, oh why, must his lungs be broken?

Today, Nick will go for this ghastly lung biopsy. I dread it with every fiber of my being. I don't know if this is the right choice, but, it was Nick's choice and he has made it. We are all still praying for a miracle to come from this. We all want him to be well in the worst way. The past 13 days have been hell. To watch Nick suffer this latest insult on his body has been truly painful and makes my heart just break in two. I want to believe that the doctors will find something to fix and all that he has to go through will be worth it in the end. I don't know how I will forgive myself if he has to suffer anymore.

Nick is not scheduled until 3PM so it will be a very long day and we won't know anything until later in the evening. Because it is a weekend, the tests won't even be back until Tuesday at the earliest. In the meanwhile, I hope and pray that Nick will sail through this whole thing with flying colors. At best this will be a huge test of Nick's strength and willpower. He has been a fighter for so long, I just need to know he has another round in him. I wouldn't blame him for throwing in the towel, but, that is not our Nick.

Lately, Nick has been so exhausted that even thinking has been tough and there is always way too much to think about. So for now, I must sign off. I am going to go and hold my son and keep him safe for at least a few more hours. If only a mother's love could cure cancer and all its horrible complications. Then my beautiful son would be well and truly healed.

I Want My Miracle

“Never tell a young person that anything cannot be done. God may have been waiting centuries for someone ignorant enough of the impossible to do that very thing.” G. M. Trevelyan

Nick continues to struggle with the decision about the biopsy. I am uncertain as to what is the best way to help him. I feel helpless to ease his burden or his suffering both physical and emotional. Nick has been "stable," however, his breathing has not shown any signs of improvement since he has been here in the hospital. Nick's status has not returned to the baseline he had prior to coming into the hospital, which was not great, but, better than now.

Nick has been in a holding pattern for the past ten days. It feels like the doctors are giving Nick two options, the biopsy surgery or nothing. This may not be the case, but, this is what it feels like to us. They have not presented a plan as to what they would do if Nick chose not to have the biopsy done. The choice may appear simple to them, but, it is quite complicated and the procedure is fraught with danger and outcomes we may not like. I cannot tell you how horrible it is to feel "trapped" into making this "lesser of two evils" choice. Ultimately it is not just about the "test." It is about all the bigger life issues that come with choosing to have the test or choosing not to have the test.

There is nothing in life that prepares a young adult to make a choice like this! There is nothing that prepares his Mom, his Dad, his sister, his girlfriend, his family and his friends to help one make a choice like this. I keep asking myself why, why why??? If you believe in higher powers trying to send some message...I cannot figure out what message that would be. I am powerless to help my own child. I have done everything I know how to do and yet, it is not enough. It is a feeling of such anguish and pain that it regularly brings me to my knees and makes me want to curl up into a ball of sobbing mush.

I have no patience for the ruminations of medical science. I have no care for the limits of their ability to fix what they have done. How dare they shrug their shoulders at us and tell us in somber and hushed tones that this biopsy is the last thing they have in their bag of tricks. Is this one trick that is left the one that will work? There are no guarantees either way. God knows we are clinging to the tatters of our shattered hopes and dreams with all the tenacity and strength we can muster!

I once read a book entitled, "It's Good To Know A Miracle." It was another mother's story about her daughter who successfully navigated this pot-hole ridden path, they call a "cure" for leukemia. I want Nick to be a MIRACLE too! I want Nick to have a reprieve...I want the red phone on the wall to ring. I want it to ring now...today! This is too much for anyone to have to bear.

Nickolas is staying positive and strong, but, it has not been easy for him. Please pray for him to receive the guidance, mercy and strength he needs to move forward. Since he has been in the hospital, he has just been marking time. He is awake and completely present, but, physically, his lungs and his breathing are keeping him on bedrest. He hasn't been getting out of bed at all. He will sometimes sit at the edge of the bed or sit up in the bed to eat. His appetite has been steadily declining and he has not gained back an ounce of weight. His oxygen requirement is not too much higher than when he was at home, but, now he is just lying around in bed...not moving, standing, sitting up etc. There is really nothing that they are doing for him right now that is making a difference in his breathing situation.

For the most part the nurses have been very good, although Nick's care is minimal so most don't spend too much time in the room. There are a few nurses here we like very much and they genuinely care about Nick. One of the most helpful people in this whole process has been a social worker here on the floor. She has been such a wonderful support for Nick and all of us. She has such a beautiful way of expressing things, a gentle way to ask questions and she actually listens to Nick and I when we talk to her about everything that has been going on. Thank goodness for kind and caring people who help you keep your footing on this path strewn with obstacles. I am tired and I must go. Since tomorrow is Monday, things will actually be happening at the hospital. I am so scared right now, words cannot express. This is a new level of terror.

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.” Carl Gustav Jung

The Enemy At the Gate

Sometimes you feel like a nut...
Sometimes you don't.

It is late and I should be long ago in bed...trying to find the energy to post an update. Nick is hanging in there as best as can be expected right now. The days all seem to run together and I have given up on keeping all my ducks in a row. For right now I am happy with keeping some of my ducks in a row.

The decision on the lung biopsy has not been made. We have talked with so many doctors, our heads are spinning. The last couple days have been a time for processing all the information, and also for quiet and thoughtful reflection, a time to just listen to one's inner voice and see what may come. Ultimately, Nick will find his way. He knows that we love him and we will be there for him no matter what he decides. Nick's path on this journey has always been strewn with potholes, fallen trees, boulders and other obstacles that appear insurmountable. Not one to shy away from a challenge, Nickolas has managed to defy the odds and emerge victorious. (After all, his name means, "victory of the people!")

In true Nick form, even with all this crap hanging over his head, even with fast breathing and high oxygen flowing through a plastic green mask, today Nick wanted to discuss what color kitten or cat we should get! We have all been missing the Mickster and we figure a new furry edition to our lives will make us all smile and purr with contentment. Isn't that all we really want from this life...smiles, laughter, and joy? Please send your prayers for Nick, please pull in whatever Heavenly favors you have outstanding, please send your good wishes to Nick for he needs everyone pulling for him right now. With courage and tenacity we must remain steadfast in our resolve for the enemy is at the gate.

More Sand

Walking through the desert,
Thirsty and tired.
Praying that the water hole is over the next ridge.
You climb in the searing heat for what seems like an eternity,
Your heart is heavy and your lungs are burning.
The heat rises relentlessly from the desert floor,
Parched lips and blistered feet
cry out for the blessed relief of cool, clear, water.
Just one more hill, you can make it, just one more climb.
We crest the hill, this has to be it...our survival depends on that water.
Only there is no water, there is only more sand.

Nick was readmitted to the hospital this past Friday. After spending most of Thursday and Friday down at Hopkins getting photopheresis treatments, blood work, dressing changes, seeing the doctor, chest CT scans and more...we headed for home. Nick's lung status has been declining by slow degrees ever since he left the hospital on May 13th. We have called, seen and talked to the doctor on endless number of occasions. We really don't know what happened or why, but, for some reason Nick was having a lot of trouble with his breathing and he was very short of breath. So around 9PM on Friday night we returned to Hopkins.

Saturday was rough as Nick was really not feeling well and any activity (sitting on side of bed) kicked off what I am now calling a "spell" where Nick's oxygen level drops very low and his breathing becomes extremely labored. This happened twice on Saturday and it was so scary for Nick and by default those of us gathered around his bed trying to figure out how to help him.

Fortunately, he was a bit better on Sunday, but, still on a lot of oxygen (long story) and really not able to get out of bed for any reason. On Sunday, he seemed a little perkier and his appetite was a little improved. We have seen quite a few doctors and the bottom line is they once again want Nick to undergo an open lung biopsy. Without going into detail right now, suffice to say, that this is an extremely risky procedure for Nick to go through with his lungs in their current state. This was the same test that Dr. Hallelujah decided to cancel on the day of the test!! Now there is a new attending, who feels that Nick should get the biopsy for fear that "they are missing something that might be able to be fixed." They were trying to have the test done today (Monday) but, Nick wants more time to think about this decision and he doesn't want to be rushed into something like this.

Let me just say that I don't have the energy to address even half of what has been going on, this is the main reason I haven't been posting a lot because I need to focus the energy I have on Nick and help him to get through this latest stretch of desert. We are all parched and in sore need of restoration. I will try to write more later, but for now I must go to bed. I am asking everyone to pray for Nick to receive the strength and guidance he needs to make this decision.

“When the morning's freshness has been replaced by the weariness of midday, when the leg muscles give under the strain, the climb seems endless, and suddenly nothing will go quite as you wish-it is then that you must not hesitate.” ~Dag Hammarskjold

Choosing Happiness

One year and three days ago on May 28th, 2008, Nick's life and the lives of those who love him were forever changed. I will never forget the shock and disbelief we were all feeling. It seems like just yesterday that Nick and I made that first fateful trip to John's Hopkins and now it seems like there is no end in sight. Nick has been through so much and yet he remains steadfast in his mission to stay "in the fight" against what has proven itself to be a formidable enemy.

While I often use this blog to complain and whine and express all manner of frustration, I would be remiss if I didn't give thanks for all the blessings in my life. I am not a very "up with people" kind of person. I tend to see the glass half empty...it is just the way I am. In my own life, the mix of nature and nurture has created who I am and try as I might I can't seem to undo the way I view a world that can often be so full of pain and suffering. On the other hand, there are often equal amounts of goodness, love and caring to balance all the bad stuff. I guess it just seems that the bad stuff has been up in my face for so long, I can't help but be overwhelmed with it all. Where are the damn rose colored glasses when I need them?

So here is an excerpt from a wonderful book called "Growing Wings" by Kristen Jongen. It is Sara's book and she lets me borrow it when I need inspiration. The title of this excerpt is called "Shoe drop." This is so what I CANNOT seem to do....I am always waiting for the other shoe to drop and this only seems to make one irritable, jumpy and unable to live in the moment. That is why I love this little story...I want to "learn to trust happiness." So anyway, here goes.

shoe drop by Kristen Jongen

"It occurred to me this reprieve of sadness is a choice. It's a choice to mentally let go of the obsession to worry even in the midst of the storm-and let the ship sail where it may. I am always afraid of retreating into denial if I don't face something down. Yet there is a happy medium, I suppose. A place where I choose to be optimistic. A place where I unabashedly allow myself freedom and happiness without feeling it's an invitation for the other shoe to drop. I want to learn to trust happiness. To let myself feel good. The shoe can drop whether or not I am happy, sad, pensive, obsessive, staring at it or enjoying myself. Watching it drop is, in the end, no less painful than hearing it drop and turning to look. Or hearing later that it has dropped. The fallout is the same. At least it has been, to this point. Why not choose happiness?"

Dr. Lee Nadler: A Force of Nature

Cute Puppy

So I needed to post a picture that would make me smile. Oh my gosh...so adorable. Nothing like a furry little ball of love to bring some happiness to a place otherwise bereft of joy.

It has been very rough around these here parts lately. Since Nick has been out of the hospital, we have been busy going back and forth for his appointments 2-3x/week. They are basically all day affairs that are physically and emotionally draining for me and for Nick in one way or another.

Just the other day as Nick & I sat in the crowded "PICC's & PORTS" waiting room, we saw a really cute little girl who was there with a family member. She was skipping and twirling about the place, oblivious to the pain and suffering in the room. I said to Nick, "I really miss my little kids." They have so much joy and happiness in them. I remarked that the 2nd floor clinic could sorely use some joy in rather large doses! They need a clown, or some dancers, or a parade to come marching through there one day. At first there would be shock and then there would be smiles, and chuckles and actual moments where all could forget what a freaking hell their lives have become...or is this just me projecting my own feelings onto others? They need one of those Pet Friends to come so everyone could "ooh" and "ah" over the furry creature and how cute and well behaved he or she happens to be! I am telling you there are just days I want to stand up on a chair and start screaming like an insane woman...HELLO! Is anybody out there? Is this hell's waiting room? Where was the wrong turn we took that lead us to this place full of people who are so busy they don't even see us? Why can't we find our way back?

Nick has been having a lot of trouble with his breathing. The steroid taper was not going well, so Dr. Pants put Nick's dose back up where it was, so now he is back on really high steroids again. What does all this mean? I have no freaking clue right now. And apparently the doctors don't really have one either. I have been trying to look up options for Nick to see other doctors and there is a study at NIH on GVHD we might look into. No miracle cures though. Most days I am tired and sad...I cannot shake these feelings that are pulling down. I cannot figure this one out anymore. I do not understand. I am tired of being patient and I am tired of the whole messed up medical system. I could write a book filled with prescriptions for frustration.

Today we met another young woman who also has lung GVH!! She also must wear oxygen 24/7...she is fighting, staying strong, just like Nick. Her Mom runs for food, wheels her chair, waits patiently...knitting sweaters. I don't want to knit sweaters, I want to bang on the walls and break glass and kick people in the shins and say "Wake the fuck up...fix this! Fix what you have done with your drugs, and your cures, and your theories, and your maybe this might work, and your we don't really knows! It is endless and ruthless in it's onslaught. For Nick I will stay strong and keep on. That is all I know how to do right now. I have no patience for people who won't work as hard as I do to help my son. God damn slackers! So that is all the anger I can spew for now...for those who can't handle it, just keep looking at the cute puppy.

Always Remember

"Mansions of The Lord"

To fallen soldiers let us sing
Where no rockets fly nor bullet wing,
Our broken brothers let us bring
To the Mansions of the Lord.

No more weeping
No more fight
No friends bleeding through the night
Just divine embrace
Eternal light,
In the Mansions of the Lord.

Where no mothers cry
And no children weep
We shall stand and guard
Though the angels sleep,
Oh through the ages let us keep
The Mansions of the Lord.

Flags In

Soldiers of the 3rd Infantry "Old Guard" worked with members of the Navy, Marines, Air Force and Coast Guard to dress more than a quarter-million graves Thursday to prepare for the Memorial Day holiday.

The 250,000 flags were placed in a little more than three hours.

"Flags In" has been a Memorial Day tradition at the Arlington National Cemetery since 1948. It is the only time of year flags are displayed on every grave.

Section 60

Remember

Even in our sleep, pain which cannot forget
falls drop by drop upon the heart
Until, in our own despair, against our will,
comes wisdom through the awful grace of God.

~Aeschyulus

Bravely Singing

In Flanders Field the poppies grow,
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly Scarce heard among the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders field.

Written by Lieutenant John McCrae, MD (1872-1918) Canadian Army

Of Light And Sun

“Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.”

Tomorrow Nick and I will travel back to Hopkins to have labs done, see Dr. Pants and Dr. Frosty, and get the general once over. Nick has been holding his own here at home. The crepitus in the chest remains, but, Nick has no signs of any deterioration in his lung status. We are slowly figuring out a schedule for home and we have not yet ventured out beyond our trips to the hospital. We will return on Thursday and Friday of this week for photopheresis treatments. It will take time for Nick to regain his strength and this in turn will take improvement in his weight and nutrition status. Today Nick's appetite was down and he seemed a little more tired than usual. Today Nick sat outside and watched the sunset. It was nice to know he was enjoying this moment, the cool air, the calm sky, the time to reflect and renew the spirit; to find solace and strength in the miracle of another day.

The picture is of the Apollo temple at sunset in Turkey. This prompted me to read about the Greek god, Apollo. Apollo has been variously recognized as a god of light and the sun; truth and prophecy; archery; medicine and healing; music, poetry, and the arts. We could use a god of medicine and healing right now, but, for the moment I will settle for light, sun, truth, music and poetry!

“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.” August Wilson

A Walk In The Park

Has it only been two days since I last wrote something? It seems like an eternity. My life is anything but stable or reliable right now...it seems I never know from one moment to the next where I will be or what I will be doing. It is somewhat unsettling at times, although, I have gotten used to it? Today, Nick and I had to go down to the clinic so Nick could get a CXR. Since Nick came home the air in his chest has continued to re-accumulate. Last night he had big bubbles of air under his skin and all over his chest and neck. Nick decided he should go on 100% NRB here at the house, so yesterday, I called the on-call doctor to make sure that was OK. She said as long as Nick was "stable" we could do that and come in this morning to get checked out. The CXR showed that Nick definitely has more air (fancy name = subcutaneous emphysema), but, he had no signs of any collapsed lung and since he was "stable" that he could go home. The CXR is not the best test to see what is going on, but, the CT scanner doesn't go on weekends, unless you are admitted! CRAZY....this place is driving me CRAZY!!

The bigger question is why does Nick keep getting these pockets of air. The answer seems to be because his lungs are just extremely fragile right now. The doctors are calling it "air-leak syndrome" and this is something that can happen to a rare group of BMT patients who get lung GVH and then get this syndrome. We don't know if it is fixable or reversible at this point. This "condition" along with the debilitated state of Nick's lungs is a source of anger and sadness for all of us. Nick will continue with his current therapies in hopes of a miracle cure of some sort. Right now those treatments include the photopheresis, the steroids, and the immunosuppressant medication. In addition, Nick is supposed to have "aggressive pulmonary rehab" but I don't know what that means or how it is supposed to help.

In the meanwhile, Nick has been doing well otherwise for the short period of time he has been home off and on over the last few days. I can't quite grasp the whole idea yet as we have not yet settled into any kind of a routine. Nick is eating like a champ due to the steroids and appetite stimulant. However, he has not gained an ounce of weight. I swear he has a hollow leg where he is putting all this food. Nick continues to have to check his sugar and give himself insulin shots.
He is doing great with this and with all of his medications, which are quite numerous. Nick says,


Nick has a borrowed XBox so he has been playing a lot of video games...Grand Theft Auto and Halo apparently are quite addictive, since he seems to be playing them a lot! Nick has been trying to figure out how he can start doing some fun stuff. It is going to be a challenge with the oxygen and his current physical limitations...but, we are all determined to make things happen for Nick in whatever ways possible. It may take baby steps and a lot of trial and error but, I know we can figure out ways to get Nick out and about as much as possible. There is always the infection concern, but, we have to find a balance between Nick's medical needs and his opportunity to have some kind of life outside of being a patient all the time. It is very difficult right now as we are all trying to figure out what Nick's baseline will be. Is this where the world stops and we all get off? A year ago at this time, I hoped that Nick would be well on his way to returning to a "normal" life. I hoped and prayed with all of my heart that he would be one of the lucky ones who beats the odds. It seems that those hopes, dreams, and visions for the future must be modified, adapted, changed and rearranged.

Right now I can't think too much about all that is happening, when I do I get pretty upset. I have not felt that I can really put all that I am feeling out there right now. I guess I will eventually, it is hard for me though, because I know that Nick, Kate, and lots of others read this blog and I don't know how much to say or not to say. My emotions are like a roller coaster and I have not yet figured out how to get off this ride.

I hope to channel my energies into the following areas: 1) continue to take care of Nick in the here and now...which is a full-time job, 2) work with Nick and his medical team to facilitate short term and long term plans for his current situation...I will not let these doctors just string us along on a month by month basis. I want a plan, I want second opinions, I want everything possible to be done to make sure Nick's quality of life doesn't deteriorate any further, and finally 3) I want to spend as much time as I can helping Nick do the things he wants to do to enjoy this life that we are all given and take so much for granted. I have a good list for starters like, snowballs, going to the park, going to the mall to get some new sunglasses, an Orioles game, figuring out how Nick can go camping and sit by a fire and roast marshmallows (with oxygen?), going to the beach to hang with the G-Ma, and so much more. So as you can see I have my work cut out for me...gotta get on the stick. The picture is of the Grand Teton National Park. It looks so beautiful there, doesn't it? Wyoming anyone??

“When you reach the heart of life you shall find beauty in all things, even in the eyes that are blind to beauty.” Kahlil Gibran

Warm Fuzzies

I am happy to report that Nick was able to bust out of the hospital late last night! It took some wrangling, but, the new attending final saw the light and decided to let Nick come home. We left the hospital around 9:30PM so we were all tired, but, so very happy that Nick is back home where he belongs.

If all goes well Nick will not have to return for lab work until next Tuesday. Then we will go back for photopheresis treatments on Thursday and Friday of next week. Hopefully, Nick's lungs will cooperate and we will be able to settle into some kind of "outpatient" rhythm, coordinating his lab work and all his appointments to minimize the number of trips we must take downtown. For tonight, I am just going to enjoy having Nick back home in his own bed and my family all under one roof. Goodnight all.

Ebb & Flow

Once again our ship has run aground. After three days at home, Nick was readmitted to the hospital on Saturday night. To make a long story short the air in Nick's chest, which is called a pneumomediastinum, came back and started causing some symptoms. Nick was breathing a little faster, needing a little more oxygen. and then he started having a lot of pain in his chest, neck and back. In addition, Nick discovered that he had little air bubbles under his skin. This is called "crepitus." When you feel your chest or neck with your fingers, you can feel little bubbles or crackling under the skin, like rice krispies. This crepitus should not be there and is not normal. On Saturday afternoon, when Nick discovered this, I called the doctor who told us Nick would have to come in and be admitted and he wanted Nick to get a chest CT scan. Nick, Kate, and I spent a LONG night at Weinberg waiting for the scan to be done. The moonlighting doctor was very NICE and he assured us he would do everything in his power to get Nick discharged early in the morning. Kate & I stayed with Nick until about 3AM! I felt so bad that Nick had to be in the hospital again and I know Kate did too. It was such an emotional let down for all of us, but, of course, it hit Nick really hard! The most frustrating part was the WAITING for the stupid test! If it was such an urgent situation why did Nick have to wait until 1AM in the morning to get to the CT scan? Then to add insult to injury, we found out that the moonlighting doctor is not allowed to discharge anyone! Nick was told he would have to be seen by the "team" in the morning, then maybe he could go home. OH MY GOD!! I am thinking to myself, uh...that would be the same team that sent him home with this problem in the first place??? ARGH!! We even considered signing out AMA or putting a bunch of pillows in Nick's bed to make it look like he was sleeping and SNEAK OUT the front door.

On Sunday morning, I called Nick and he said they were going to send him home. As I drove to the hospital that morning, I was so happy that I was going to get my boy and bring him home again. Then I got the call from Nick..."Mom, they won't let me come home!" My heart just sank and my Mother's Day balloon of happiness just popped! The attending doctor, Dr. Lugnut, did not feel that Nick was ready to be sent home, so he is now back on 5B hoping the doctors can figure out why this air thing keeps happening. Now that Nick has had a little time to process all this his spirits are better and he has bounced back with his usual positive energy and the easy going Nick is back. I am not sure how long Nick will have to stay in the hospital. I hope he will only have to be there for a few days. I will keep everyone posted. On a positive note, Nick is feeling pretty good despite all the air in all the wrong places and his uncooperative lungs. His appetite has been great, although he has not gained any weight yet! He's working on it though.
Nick remains without fever or obvious signs of infection. He is still the best son in the whole wide world! Being his Mom is a great thing to be! And I will close with a quote that Sara put in Nick's book of inspirational messages...I am not sure where she got the quote, but, here goes:

"Maybe being grateful means recognising what you have for what it is. Appreciating small victories. Admiring the struggle it takes to simply be human. At the end of the day the fact that we have the courage to still be standing is reason enough to celebrate!

Home Sweet Home

Nick is home at last! After a long day packing up Nick's room, three or four trips to the car, three or four trips to the pharmacy to straighten out all the meds, three pages of discharge instructions, and multiple discussions with various doctors, nurses, social work, dietitian, and equipment people, Nick and I finally got in the car TOGETHER for the first time since March 9th and headed for home. It is so wonderful to have Nick home and he is so happy to be out of the hospital. It is late as I post this and a new day has already begun. For now Nick is asleep in his own bed. Now I can breathe a sigh of relief before the next round begins. There's no place like home.

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned. ~ Maya Angelou

A Little Birdie Told Me

If all goes according to plan, which I freely acknowledge never happens around these here parts much, Nick will be discharged from the hospital today! The last few days have been spent watching Nick's numbers, waiting for test results, and preparing for Nick to come home AT LAST!!

Nick has really come so FAR, it is so very amazing. Nick is not 100% recovered, but, the doctors feel he is strong enough to come home. I do agree that Nick is ready, but, it is very different this time around because Nick will be coming home on oxygen and this will be an adjustment for all of us. The oxygen "tanks" were delivered to the house last night and it all seems pretty simple. Working out all the ins and outs of traveling with the oxygen everywhere Nick goes, might be a little more tricky...at least it will take some time to figure it all out. Right now, Nick's lungs are still showing signs of what we assume is lung GVH. The GVH causes damage to Nick's lung tissue and therefore his breathing capacity is diminished. The oxygen is necessary for him to keep his levels up. Any activity stresses Nick's lungs and the rest of his body. Part of this is due to him being "deconditioned" or in lay terms being out of shape from losing so much weight and being in the hospital for so long. It will take time for him to get back a lot of his weight, muscle mass, strength, and stamina. This will need to be a balancing act between eating and activity. I hope that Nick will be seen by a nutritionist regularly and the physical therapy people while we are coming and going from outpatient. In addition, Nick will be seen by the pulmonary and GVH doctors. We are still waiting for the results of the liver biopsy. Since Nick's liver enzymes started coming down slightly on their own the doctors have not added any additional immunosuppresants. He continues on a large dose of steroids plus his Tacrolimus (ProGraf) which tries to keep the GVH in check.

Nick will have to get the photopheresis treatments twice a week. We will have to travel back and forth from the Hop now two to three times per week, for labs, photopheresis treatments, clinic and doctor visits. There are quite a few different doctors who will be following Nick for a little while. Dr. Pants and Dr. Frosty will continue to manage his CML and make decisions regarding his treatment on this front. The leukemia treatment per se is really up in the air right now. Nick was taken off the oral chemo drug (Dasatinib) and the doctors are not to keen on restarting it right now as they feel it may have had a part in suppressing his counts. The IT chemo treatment of his spinal fluid is also on hold right now. The doctors do not want to give Nick anymore of the drug Thiotepa, because they feel that this also may have really hit his marrow a little too hard.
As in, "umm, gee we didn't expect your counts to go that low." And, "whew" collective sigh of relief that Nick's counts FINALLY came back as opposed to finding out that basically knocked his "baby" marrow out of commission permanently! (Which, by the way, is a very bad thing!)

The hope is that the radiation treatments have cleared his spinal fluid of blasts for good!! (Of course now I am sort of glad that Nick did not get that Omaya resevoir in his head, because it seems like he won't be needing it now??) Nick will have to have another bone marrow biopsy in a few months, but, for now, we are chillin' on that front.

Nick's counts are finally up! Why?? Who could say, but, we will take it. I hope they continue upward, as this makes it a little less stressful in terms of worrying about every little germ and bug in the world. Nick still has to be super careful about where he goes and avoid crowds etc. especially with the swine flu issues. Nick absolutely cannot be around sick people and he has to be careful not to overdue it until he gets stronger. If Nick were to get any kind of respiratory infection, even a cold, his breathing and his lungs might deteriorate more quickly because he has no reserve to help him get through it. At least with an improved immune system, he has a better chance of fighting off whatever comes his way.

Due to the high dose steroids, Nick is having problems with his sugars being high. This is a common side effect from steroids, however, Nick must now do finger sticks on himself to check his glucose and take insulin injections if his sugar gets too high. (Sort of like diabetics have to do) This is a whole new added layer of monitoring and yet Nick is expected to learn all this and head on out to the clinic. Of course, now we can have a visiting nurse come to check on him at home because of the insulin shots. When he was feeling like crap on a cracker and WAY sicker than he is right now, no visiting nurse could come though!! AAAARRRRGGGGHHHH!

It has been a while since we have been doing the outpatient thing. I return to that situation with much fear and trepidation. I am very concerned that Nick will once again get lost in the shuffle of the hundreds of patients flowing in and out of the doors of this place. I know it will take some time to get back into the swing of this again, and I pray that Nick continues to improve each day.
There is a lot going on and there is still a long road ahead. Nick has come so far and the road has not been easy. I am not sure if it ever will be...only time will tell.

All I know is, we all need some rest and relaxation. Nick needs a break from all this medical stuff. I wish I had an answer to the big question...WHEN???? I told Nick today he has to continue to be patient and "work the program" but, he laughed at me and said, "I have been patient Mom. I have been patient for so long." How much longer Lord...how much longer?? I sometimes consider myself to be a patient person, but, this is pushing the limits of ridiculous.
Fighting leukemia is more than a long journey...it is an endless journey that we must somehow learn to enjoy along the way.

“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.” Victor Hugo

Hungry!

Once again, one of my pictures was creating consternation on my blog, so I had to remove it and now all is well. I have been at the hospital all day waiting for Nick to go for a liver biopsy. Nick was not able to eat anything all night and he did not get called for the test until 4:00PM! All those good eating hours wasted!!! Last night, I was sort of bummed out so I was not up to posting much, but, today I feel better so I will give everyone an update on the latest developments to Nick's never ending story!

First of all, the discharge discussions have been table for the moment. Several medical issues have come up that need to be addressed before Nick can head out the door.

The first is the air in his chest (aka - the pneumomediastinum). The chest CT scan from yesterday did show that the amount of air has gone down, but, the air is still there. Nick continues on the 100% NRB mask to try to force the air to absorb into the tissues (a long gas exchange story that I don't want to explain, nor do I fully understand). The doctors are still looking for the cause of this air. A test was done to check for what is called a tracheo-esophageal fistula. The test was negative, but, I later found out that this test is only able to detect holes greater than or equal to 1cm. That is an awfully big hole! I really don't think Nick has this TEF thingy as he has no other symptoms. However, considering the radiation he received I can imagine that he would be a risk for such a hole.

The second major issue is the continued elevation of Nick's liver enzymes. Despite stopping most of the drugs that could hurt his liver and stopping the IV food, Nick's liver apparently is not happy and wants to crash the GVH party. The doctors are not sure if Nick has GVH of the liver, but, the levels are concerning everyone. Nick is on his immunosuppressant medication called, Prograf, and mega doses of steroids and yet, these levels remain high. At this point, any GVH that Nick has is considered to be chronic GVH based on the number of days post-transplant.
The doctors ordered a LIVER BIOPSY to confirm that it is GVH. If it is GVH, additional medications may have to be added to get the liver enzymes to come down. They do not want to put Nick on these extra meds unless it is confirmed that he has liver GVH. These immunosuppressant meds have so many other side effects, they only want to use them if necessary. If it is NOT GVH, then the doctors will have to figure out what is the cause of this problem.

Nick was wheeled by stretcher to the interventional radiology department. There he had to have his neck numbed up and he also got some sleepy meds in his IV. They then take a big needle and put it in Nick's jugular vein, I will spare you further detail, but, they must thread this catheter down through Nick's vein to get to his liver. Then they put some kind of "grabber" thing down there to pinch off the biopsies of the liver tissues. The biggest risk is bleeding, followed by infection. Nick had to get platelets this morning to bump up his platelet counts for the procedure. He sailed through the procedure (thank goodness, I was worried....surprise!) and now has a new "hole" to add to his collection. I am not sure when we will have the results, but, I am sure it won't be tonight as all the doctors are gone now.

Since Nick's return to his room, he is awake and ready to eat! He ordered himself some dinner and ate heartily! If things go well, we are still hoping that Nick may be able to come home next week sometime. I have been slowly taking things from his room to minimize the load on the actual discharge day. Please keep Nick in your prayers. He is getting stronger. His appetite is improving. His body is fighting the consequences of this cure and most importantly his spirit remains indomitable and unbroken! "Man never made any material as resilient as the human spirit." ~Bern Williams

All But Lost

Tree at My Window by: Robert Frost Tree at my window, window tree, My sash is lowered when the night comes on; But let there never be a curtain drawn, Between you and me. Vague dream-head lifted out of the ground, And thing next most diffuse to cloud, Not all your light tongues talking aloud Could be profound.

But tree, I have seen you taken and tossed, And if you have seen me when I slept, You have seen me when I was taken and swept, All but lost. That day she put our heads together, Fate had her imagination about her, Your head so much concerned with outer, Mine with inner, weather.

Make A Wish

Today when I arrived at the hospital Nick was on his way to the physical therapy room to practice walking up and down stairs. The physical therapy people are working with Nick to make sure he can do basic things that we all take for granted when we are healthy. Nick did great and hopefully this means he will be able to travel up to the second floor to his bedroom each night to sleep. Later I found out that Nick's chest CT scan had an unexpected "surprise." The doctors informed me that Nick now has air in his chest area (mediastinum) that is not supposed to be there and they are not sure how it got there. This process is called a pneumomediastinum. Nick is stable and not having any bad side effects from this air right now. It is being treated by putting Nick on 100% oxygen by a mask called a non-rebreather. The hope is that this will cause this air to go away within the next 48 hours.
Now this air had to come from somewhere...the options are a burst aveolar air sac in Nick's lung that then sealed back up (his lungs are find and show no signs of collapse.) If you get an air leak in your lung that is not good. It would be as if you lung was a balloon with a small hole in it and it would leak until all the air had gone into your chest area behind your breast bone. As the air leaks out of the balloon, the balloon collapses on itself and then it does not function as your lung very well. Generally it cannot re-expand without help from the outside. Also, the air leaving the balloon can cause problems if there is a lot of it. Now in Nick's case, the lung is not collapsed and the amount of air in his chest is small. So if it was an air leak of his lung, it was a small one and then it sealed itself off.

The other possibility would be a small hole or fistula in his esophagus, perhaps caused by a combination of factors such as radiation, vomiting, forceful coughing, and damage to the mucosal lining of the esophagus. This is not likely to be the case as Nick is eating, drinking and swallowing without difficulty. He has already had several swallow studies, but, Dr. Hallelujah came in today to let us know she wants to repeat it, just to make sure there is nothing going on there that has developed since the last test or that was missed.

Nick was more than a little bummed by this latest development, but, hopefully, the oxygen treatment will work and Nick will be back on the path to getting out of the Hop for good. We are still not sure when Nick will get the word that he can come home. There are still a lot of little issues and details to be worked out, but, we are all hoping it will be very soon. Nick's counts are rising, the only holdout being his platelet count, which is still on the low side. Nick's appetite seems to be improving each day and the IV food has been stopped for the moment. Nick is on a calorie count right now to make sure he is taking in enough food to gain back weight.

Nick will have to stay on high dose steroids for at least three months before they consider tapering his dose. The steroids are causing him to have some high glucose levels, which means he has to have his sugar checked and he has been getting some insulin when his sugars are too high. His liver enzyme numbers are climbing again. I am hoping these guys will wake up and realize they are going in the wrong direction. Nick has already had his photopheresis treatments for this week. Things went well with this part of the process, it is hard to know if it is helping or not. I know he has a nice big bruise on his arm from the huge needle they have to stick him with to get the blood out of his arm. I guess next time I'll try to take some pictures to show what is goes on behind the scenes. Have to hit the hay...more later.

Heartbreak World

It is late and I should be in bed. Instead I sit here in a somewhat zombie like state. The good news is that Nick's counts have finally started to rise! His neutrophil count today was 2370! I believe that is an all time high since January! The bone marrow biopsy was canceled because Nick's counts are all trending upward. Nick is doing so much better, it really is an amazing thing. However, his wonderful progress is tempered with a steady dose of the reality of his current lung status. For now, I will try to rejoice in the answer to our prayers, that Nick is showing steady improvement from the ravages that his body has been put through of late. Nick is working really hard at making strides toward the front door of the Weinberg building. We are keeping our fingers crossed that he may actually be able to come home by the end of this week or early next. He has many hurdles ahead with his nutrition, his photopheresis treatments and the doctors let us know today that he will have to remain on the full dose of steroids for three months! This is a long time to be on this medicine for it has many side effects. They are hoping to get him off the IV food, but, I am worried that he won't be able to keep up on his calorie intake and that he will slide back on the small gains he has made on his weight.

Nick's breathing and lung status are still the biggest areas of concern. Nick will have to have wear oxygen all the time for right now. His lungs have taken a bad hit from the graft vs. host and no one knows for sure if this will improve or if his lungs will always be the way they are right now. What I know is that this part of it is truly breaking my heart. I am very angry that this might have been caught sooner and it was not. I curse the phrase "the new normal" and yet that stupid phrase has never had a more profound impact than now. I am trying to wrap my head around all this and right now I cannot seem to find the energy to do it. Tomorrow is the last day for Dr. Hallelujah and I am very sad about that as well. We will start with ANOTHER new attending, this will be the FOURTH one since Nick was admitted 51 days ago!!! The concerns regarding Nick's level of care when he gets discharged are causing more gray hair and wrinkles. I have resigned myself to the fact that he will be getting most of his care and monitoring at home and all we can do is take care of him the best we can and pray that the safety net does not have a hole in it when Nick needs it. Onward through the forest we go...

The Wind Of My Soul

When the wind blows, the dark clouds often clear away and a beautiful blue sky is revealed. I am not sure what is happening or why, but, Nick seems to be showing some serious signs of improvement. Yeeee-haaaw! Not to get too excited, but, any progress in the right direction at this point is such a welcome change from what we have been dealing with for the past seven weeks! I still cannot believe that we have been at this since early March and here it is almost the end of April! If nothing else time has provided some healing and for that I am grateful.

Nick actually had a great day yesterday and today. He looks better and I think he actually feels better. His color is much improved due to all the blood transfusions he received at the beginning of the week. The blood has also helped his resting heart rate come down to a new low of 89 today! This is great for Nick, as he usually runs in the 110-119 range, and even higher with any kind of activity. Nick's other vital signs have been stable and there have been no fevers!

Nick's appetite is slowly returning and he has been eating a little more each day. I hope he will be able to increase his calorie intake enough so that he does not have to come home on the IV nutrition, but, I also don't want him sliding back on his weight. He weighed 140 lbs. the other day, some of it may be fluid, but, I think it is real weight gain! Yeah!! Nick still has quite a ways to go to take in enough calories to gain weight, but, it is progress in the right direction. His stomach pain has lessened, but, does rear it's ugly head every now and then. It seems like it is reflux pain, but, he is already on Protonix 2x/day, Reglan q6h ATC, Maalox prn, and nothing seems to help when he has the pain. Nick is still getting the IV nutrition via his PICC line every night. They have it "cycling" on for 12 hours and off for twelve hours. He has had some glucose elevations due to the steroids on top of the high dextrose concentrations in the TPN, so they have to put insulin in his IV food and check a fingerstick for glucose every so often. Nick really hates these finger sticks so I hope he can get off the TPN soon. Although, that may not solve the problem, as it is most likely the steroids that are causing the elevated sugars.

Nick continues with LOW COUNTS which is a big concern. All his counts have been running low, especially since the radiation. Prior to the radiation treatments, Nick's red blood cells and platelets had been completely stable, needing no transfusions. Now Nick's RBC's and platelets are having to be transfused regularly. In addition, his WBC's and neutrophils have continued to run VERY LOW! This is also being attributed to radiation, however, the most likely cause is due to the intrathecal chemo drug called Thiotepa. Apparently between the IT chemo drug and the radiation, Nicks "baby" bone marrow took a significant hit and the concern now is WHEN WILL HIS MARROW RECOVER AND KICK BACK INTO MAINTENANCE MODE??
Nick will be having a bone marrow biopsy on Monday to check to make sure that the leukemia is still in remission and also do some other testing to see what is going on there. The MD's may still decide to treat with some G-CSF (growth colony stimulating factor) and this will hopefully jump start Nick's low counts. The other option would be to continue to watch and wait and hope the counts return on their own. This would be hard because w/ no counts Nick would be completely vulnerable to a myriad of germs and potential infections.

Nick is still battling what everyone thinks is most likely GVH of the lung and liver. He is on IV steroid dosing once per day. He seems to be doing better on the current regimen of steroids, photopheresis, and Azithromycin. I am not sure what has worked...maybe it is all of the praying and as my Mom would say, all the "wailing, moaning, and gnashing of teeth," that have finally made a difference in Nick's breathing. Nick is still on the oxygen. Today they tried him on a nasal cannula @ 6L and he did well, as long as he wasn't trying to move around too much. Nick also got up and took two laps around the nurse's station. His leg muscles are getting stronger, less wobbly, and he is literally less "weak in the knees." His breathing rate is not as high after he walks and he did not drop his oxygen level at all during the walk. He actually walked on less oxygen for the first time tonight and his numbers were very encouraging. This is not to say that he is suddenly "fixed" but, progress is progress and we will take it!!

Hopefully, it won't be too much longer before we can start to think about getting Nick home. It will be a more complicated discharge this time due to the need for oxygen at home and the uncertainty about Nick's activity tolerance. Nick will still have to go back & forth to Hopkins quite frequently to have his labs followed, receive transfusions as needed and get his photophoresis treatments. Dr. Meade, the GVH specialist, said Nick will have to stay on the steroids and all these other treatments for at least two to three months, then they will re-evaluate Nick's lung status and make decisions about where to go from there.

I am trying not to get too revved up about Nick's improvements, you know, keep an even keel and all that, but, for the first time in what seems like forever, I am cautiously optimistic for the short term and breathing a sigh relief. The current attending who has been so wonderful, Dr. Hallelujah, will be going off service next week. This means we will have to start again with a new attending. I am hoping for a good listener and a smooth transition. We do not know this new doctor at all and this doctor does not know Nick at all! Very frustrating to think we will have to capsulize eleven months of treatment into a four or five sentence blurb! For now, I am not going to think about that...I am looking forward to the weekend, the beautiful weather, and spending time with Nick when he actually feels good. We hope to be able to get him out of his room for a change of scenery and we may even get him outside for a bit. The doctors have said he can venture forth as long as he does his walking first.

Here are two quotes that I found that I felt were a nice complement to this post. The first really says it all when it comes to how well Nick has learned to maintain a positive mind over body attitude throughout this whole process!

“I believe the single most significant decision I can make on a day-to-day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failures, fame or pain, what other people think of me or say about me, my circumstances, or my position. Attitude keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right, there is no barrier too high, no valley too deep, no dream too extreme, no challenge too great for me.” Charles R. Swindoll

And I liked this one too. When I read it, it reminds me to stay positive and think good thoughts.
That way we can all sprout wings and fly, avoiding the jagged rocks and heading straight for the clear blue sky!

“Build this day on a foundation of pleasant thoughts. Never fret at any imperfections that you fear may impede your progress. Remind yourself, as often as necessary, that you are a creature of God and have the power to achieve any dream by lifting up your thoughts. You can fly when you decide that you can. Never consider yourself defeated again. Let the vision in your heart be in your life's blueprint. Smile!” Og Mandino