"Angerversary"

One year ago today was "Day Zero" for Nick's bone marrow transplant. Today was supposed to have been a celebration of his one year anniversary of beating his leukemia. It was such a hopeful day...we wished with all of our collective hearts that this gift from a stranger would be the answer to our prayers for Nick. When I look back at my notes on this month from a year ago today, I find each day is filled with the steps of that journey. Now I look back with anger, sadness and shattered dreams. I cry every day and every night for the loss is so great I do not know what else to do. I straggle my way through each day, with mundane tasks taking my mind briefly away from the grief that I feel. I am on a different roller coaster now, where emotions rise and fall like waves crashing to the shore. Such a senseless loss will not be easily understood, nor accepted.
Last August seems so, so, so FAR AWAY! Today I had to go the funeral home to pick up death certificates for my first born son. How is that even fathomable? When I read the listed cause of death as "pneumothorax" it brings back all the horrible memories of that last week and those final days that are indelibly etched in my mind. I cannot forget and I still cannot forgive myself for failing my son. It makes me so very sad. It makes the memory of this day all the more difficult to bear. I remember how wonderful Nick was and what a trooper he was and how positive he was at that time. How were we to know the the magnitude of the struggle Nick was about to face, that the fight had only just begun and that ultimately the fight would be lost no matter how courageously we fought. It just breaks my heart over and over again. I love you Nick. I miss you every minute of every day. My heart will never be whole again. Today I got a card from Nick's pediatrician. It was so nice to hear from him and his memories of Nick. He was shocked to hear of Nick's death. He did not know he was sick. Once again, I cried sad and bittersweet tears. For there is no joy in my world right now. There is only the darkness left when the light of my beautiful son left this world.

“Anyone can become angry - that is easy, but to be angry with the right person at the right time, and for the right purpose and in the right way - that is not within everyone's power and that is not easy.” Aristotle
P.S. - Jack's Mannequin concert in Washington DC sold out before I could get tickets. Not happy about this...I really wanted to go to that concert. Oh freak!

Sorrowful Through Loss

I'd like to think that this was a road that Nick would enjoy traveling on, either by foot or maybe on that bike he was supposed to get when he was better. We are all still struggling day to day here. Nothing seems right. Nothing fits like it should. Sadness is the prevailing wind of the day. Nothing seems to ease the pain of this loss. We are all trying our best but it ain't workin'. When I read back on my blog, it only serves to make my heart break over and over again to see the level of pain and suffering that Nick had to endure over the last months of this illness.

Bereft

Alone on this one way street

No turning back now.

Hiding in the shadows cast by the pieces of my broken heart.

Keep moving. Don’t stop, lest you be consumed.

The muck seems somehow acceptable.

I no longer fear, the worst has already happened.

Sometimes there is pain so deep, a brief dose of reality.

Memories are no consolation.

There is no going back.

Dreamless sleep betrays me and brings hard truth.

I will never see you again. ~Big D

Eleven Days

I miss you Nick.
Every minute of every day.
Has it only been eleven days?
It seems like an eternity already.
I never know when the tears will come, brought on by some random thought of you.
A wound this deep will never heal.
How I wish I could see you again, talk to you again, see your smile and hear you say, "I love you Mom."
I miss you so.

Here is the link for Nick's obituary that appeared in the Baltimore Sun on Sunday, August 23rd.
Here are two Walt Whitman quotes that I like. I think Nick would liked them as well.

“I have learned that to be with those I like is enough.”

“Keep your face always toward the sunshine - and shadows will fall behind you.”

Eternal Mourning

How can I put into words what I am feeling right now? I don't think it is possible to make it clear how sad I am, how angry I have felt at times, and how lonely I am without my sweet boy. Today the "death notice" came out in our local paper. Nothing liking writing and then reading your own son's obituary to bring the day to a glorious close. Then I come home to find a letter from Johns Hopkins on the table. It's not a letter of apology for all their freakin' screw ups, nor is it a letter of sympathy or condolence from all the higher up mucky mucks who have charged the better part of one million dollars to fix Nickolas and basically failed miserably. No this letter was the "provisional" autopsy report and that to is full of inaccuracies and errors of omission with regard to factual data. The report at this point tells us nothing except that we have to wait three more months or so for the final microscopic results. I hold no hope that this report will end up telling us anything, which will only serve to make me even angrier that I consented to this procedure in the first place. The report contains phrases that mean nothing to me right now, but, they do not sound good. Phrases like "coalescing non-hemorrhagic yellow lesions with discrete borders" which were found throughout a good portion of Nick's lungs; or,
"multiple firm white fishflesh-like tumor infiltrates present through lung parenchyma bilaterally." Well isn't that just hunky-dory. It is also stated TWICE, not once, but TWICE that Nickolas "passed away peacefully." Who in the hell gets to decided this? What pathologist in what lab knows about this? They were not there...what the hell? AND...in addition where they list cause of death here is what is written. a)Pending b) Acute leukemia. Now I have to say that "B" is NOT the cause of death because Nick did not have any leukemia at the time of his death. So how can they write this?? They state that very fact that Nick did NOT have leukemia about five time in this very report. OMG! There are many things in this report that don't jive and I am not happy about it at all, so I guess on Monday I will be blasting someone in the pathology department.

I am only one of many who are missing Nickolas so much right now. All our our collective hearts are breaking. Reading these things today, well, it just makes me so sad and all I can do is keep asking myself why? Why do things like this have to happen to such good people? There are no answers I can give. There is nothing that will fill the empty void in my aching heart.

“I am troubled; I am bowed down greatly; I go mourning all the day long.”

“Melancholy is at the bottom of everything, just as at the end of all rivers is the sea. Can it be otherwise in a world where nothing lasts, where all that we have loved or shall love must die? Is death, then, the secret of life? The gloom of an eternal mourning enwraps, more or less closely, every serious and thoughtful soul, as night enwraps the universe.” Henri Frederic Amiel

Time Falls Away

Magpie comes a calling.
Drops a marble from the sky.
Tin roof sounds alarming
"Let this be a warning"
says the magpie to the morning.
Don't let this fading summer pass you by. ~Nickolas Pippen

I didn't sleep well last night. I was up to 0400. I don't know why. Before I went to bed I went into Nick's room and placed my hands on what is left of my son and cried and cried. Each day I move through the house searching for things that will keep Nick close to me...pictures, clothing, scraps of paper with his handwriting on them, anything that is a tangible reminder that he was here and he was our beautiful son. I thank God he had a little of that pack rat gene, for he has saved a lot of things that are sentimental mementos of his love for others and their love for him. I am haunted by doubt and thoughts of uncertainty. I often ask myself, "What have I done?" There have been no signs, no divine interventions, no miracle visions, no spirit horses riding through the sky. I do not often have dreams, but, the other day I dreamed (or made up in my head) that I was in the airport and I couldn't find Nick. I was distraught and crying, sitting there not knowing what to do when a soldier came up and asked me if I was alright and if I needed any help. I made it up in my head that Nick sent him to me. I found the poem above on the back of a random list in Nick's box of papers. The lyrics to this song were inside a card Nick had received from a true and loving friend. I treasure each new discovery and consider each one a special gift. What I wouldn't give to have my wonderful son back with me again. I love you Nickolas and I miss you so.

"You asked me what was wrong, I smiled and said nothing, when you turned around and a tear came down and I whispered to myself... everything is."

The Dark Things

Dreams In The Dusk

Dreams in the dusk,
Only dreams closing the day
And with the day's close going back
To the gray things, the dark things,
The far, deep things of dreamland.

Dreams, only dreams in the dusk,
Only the old remembered pictures
Of lost days when the days' loss
Wrote in tears the heart's loss.

Tears and loss and broken dreams
May find your heart at dusk.

~Carl Sandburg

Today has been a horrible day...I have spent so much time crying and grieving for my son. I have never felt such emotional pain. I want to thank everyone for their thoughtful wishes and support. I have no doubt I would not get through this without my family and friends to take care of me through this process. Today Nick was brought from Hopkins to a funeral home (by law the body of the deceased must make an appearance at the funeral home, no matter what kind of burial or funeral you want). I am having such a difficult time letting go of Nick's physical body. I had to see him just one more time. And so I did! And it was good! It was important to me to make sure that I stay with him right through to the end of this process (and I also wanted to make sure that all those damn tubes were taken out of him, and they were!) Glenn & I read him some letters that we wrote to him that we hope will soothe and comfort him. I gave him a card to take with him on his journey (and the letters) so he can read them again when he gets to his first happy place. At this hour, the cremation will be over and I will no longer have my boy to hold in my arms, to give me a hug, to dazzle me with that joyful smile, or to tell me how much he loves me. The pain of that loss is really quite unbearable right now.

Nick did not want a viewing in the traditional sense, so we are not having one. There are plans for a celebration of his life which is in the spirit of what Nick would want. There are NO set plans at this time, but, we are considering having something on his birthday of September 11th. I had hoped to get him to his one year anniversary of his bone marrow transplant and certainly to his next birthday. But, it was not meant to be. More importantly, I wanted him to be "better" on his birthday so he could really celebrate and return some normalcy to his life. I tried so hard to get him to his goal. He only just wanted to be better!!! Once again the "dark things" managed to steal this away from him and all of us. I HATE THE DARK THINGS! I know it will take time for me to get past the dark things and I am trying really hard to remember the good things. It is just that it hurts so much and I cannot bear it. I love you Nick...I miss you beyond measure.

Finally Free

On Thursday, August 13th at approximately 1750, I lost my beautiful son, Nickolas, to the lung complications of his bone marrow transplant. Words cannot express the grief and pain I am feeling right now. It was our decision to withdraw support and put an end to Nick's suffering. This was the most difficult and heartwrenching process I have ever had to go through. No parent should ever have to do this. Nickolas was a blessing in my life beyond anything words can say. I am in shock right now and cannot believe that this is real. I feel like I can't put a coherent sentence together. I cannot fathom how just hours ago my son was alive and now he is gone. Gone forever. I do not know how I will fill this void in my life. I have been missing him for days and I miss him now more than ever. To think that right now he is lying in a morgue in the basement of Hopkin's hospital, well, you might as well just take my heart and rip it from my chest. I will never be the same...this experience has forever changed me. I miss you my beautiful son, I love you with every fiber of my being. I pray to God you are now happy and free. I pray that the angels carry you to all those places you have been wanting to see and bring you all those foods that you have been wanting to eat. And most of all I pray that you are finally free of the burden of those lungs that have betrayed you at every turn. At long last you can breathe easy. Fill those lungs and scream out, "I'm free, I'm finally free." One night Nick had a bad dream and he woke up crying. I asked him what was wrong. He said, "I had a bad dream and I couldn't find you." I will always be there for you my sweet Nick. I will never be far and you will always be in my heart." God give me the strength to find a way to do this...my heart is broken into a million pieces.

Sunrise, Sunset

I guess somewhere in all this I forgot to mention that in the midst of all this hub-bub about Nick's lungs, the doctors kept insisting that much of the problem was related to Nick's "anxiety" about his breathing. I cannot tell you how angry this makes me. For the past two weeks or so, we (Nick, myself, the doctors, and Nurse Lovely, the psych nurse) have been going round and round over this issue. Nick & I have been adamant in believing that the "problem" is NOT Nick's anxiety, rather, it is now and has always been about his broken lungs. The doctors have been pushing this issue and in the process have had blinders on to any other symptoms. Nick was happy to talk with Nurse Lovely and so he did. Nurse Lovely agreed with us. Nick was not having any real symptoms of true anxiety and therefore, she was very hesitant to start any medication. Nick was going to think about his options and talk again with Laura early this week. Unfortunately, he can't talk to anyone right now and that is because THERE WAS AND IS SOMETHING GOING ON HIS LUNGS BIG TIME....i.e. - NICK & I HAVE BEEN RIGHT ALL ALONG. I had been asking about his breathing, his left chest looked slightly bigger than his right, the other day I had listened to his breath sounds and his left lung sounded terrible. I went out and asked Dr. Pulmonary about it. I told him it sounded a lot like when Nick had gotten the pneumomediastinum and whatever it was it did not bode well.

So anyway, today Nick went to get a CT scan of his chest. They found THREE HUGE pockets of air in his left lung. It is very unusual to have "pockets" of air like this. The air is called a pneumothorax, (different from a pneumomediastinum, although he has some air there too) and it's usually just a large collection of air. However, due to the scarring and adhesions from Nick having had two surgeries on this lung, the air is trapped in pockets with the adhesions acting like dividers. Normally, chest tubes would have to be placed to get this air of of the lung. In this case, this is not possible because all three of these pockets of air are inaccessible due to other anatomical structures in the area. Also, NONE of this air showed up on any chest x-ray that Nick has had in the past week or so! And to add a cherry on top...Nick has a new pneumonia starting in his right chest.

The thoracic surgeons who have mucked up his left lung and chest has already said they "can't do anything" for Nick. The interventional pulmonalogist has said that he can't do anything to fix this with 2D ultrasound guidance. That leaves the interventional radiology people. They will be letting us know what they think tomorrow. In the meanwhile, Nick remains heavily sedated and therefore, we hope is unaware of all that his going on for the time being. I am heartsick over this and I am so tired of having my hopes dashed to the ground on a daily basis. At first I was so relieved to hear that this might actually be something that could be fixed. It wasn't even thirty minutes later that Dr. Pulmonary came in and blew it all out of the water.

It has been another day of sadness and tears in imagining that our worst fears may come true here. I feel that we need a miracle to get Nick out of this. I don't know if they will be able to ever wake him up for the sedation. I don't know if I will ever get another smile, another hug, another kiss, another thought from this beautiful and generous young man. I don't know where I will find the strenght to continue on this journey, but, continue I must. I will keep everyone posted as best I can. Please keep praying for Nick.

Perfect Faith

"Still perching there, ready to take flight. Thinking grand thoughts of the new journey about to begin."
~BigD

This little fellow reminds me of the hummingbird calender that Nick has hanging in his room. Every day or so we change the page so Nick can have a new picture to enjoy. It is never on the actual month so everyone keeps trying to put it back on August.

Something to share...you know how you go in places like Cracker Barrel or Hallmark card stores and they have things with people's names and what they mean? Well I hope so because I have two cards with the name "Nick" on them. I just really like what they say and so I wanted to share them with everyone. The first is "Nick" from the Greek root Nicholas meaning "Victory of The People. Then it gives this description, I highlighted my favorite part:

"A frank person; someone who is shy until he gets to know you; he is proud of his old-fashioned ideas; can be lovable when he wants something; solid and real; has a divine nature; thinks for the benefit of the world; his reward in life is those around him." So true!

The second card has the following Bible verse: "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles." Isaiah 40:31

Nuts & Bolts of Monday...
a) Nick remains heavily sedated. Plan is to keep him this way in the short term in order to do more tests. Doctors are trying to figure out what is going on with Nick's lungs.
b) Nick's VS have been stable and his numbers continue to look good, despite the continued poor status of his lungs.
c) Nick ended up getting his trach tube changed out at the bedside (long story). So now he has a #8 trach tube. So far it hasn't helped anything.
d) Had a big meeting with the doctors, nurse from palliative care team and social work. The main thing that was established was that the doctors are not giving up on Nick. They are very concerned about these latest developments and want to do everything in their power to find what is wrong and try to fix it. Given that Nick has no leukemia and no GVHD right now, they want to be sure to give him every chance to "bounce back." So for now we are in limbo...it was also discussed that communication between us and the doctors needs to be better. (Understatement of the century).

Thank you to everyone for your well wishes, prayers, and words of support and encouragement. It is good to know there are so many people out there pulling for Nick. It means so much to us.
Please keep praying for the miracle that we need. I am trying to find solace in the fact that while sedated Nick is not suffering, but I miss my Nick and I want him to be able to come back to us soon. I miss his smile and I miss my "I love you Mom."

“The reason birds can fly and we can't is simply that they have perfect faith, for to have faith is to have wings” James Matthew Barrie

Air

I picture Nickolas like this one day; healed, free of the burdens he has been carrying for the past year, free of the pain, free of the bad dreams, free of lungs that betray him even as I write this.

I am sorry to say that Nick has taken a turn for the worse. Over the past few days his breathing "fits" have become more severe and more frequent. Last night was horrible. Nick was struggling to catch his breath, he felt tired and he felt like he couldn't slow his breathing. He was asking for medication to sedate him and take away the air hunger practically every hour on the hour. He cannot have the medicine this frequently so he would lie in silence, stoically trying to make through each torturous minute, until he could have the medicine and be put back to sleep. We have been telling the doctors about this since last Wednesday night. I cannot even begin to go into all that right now. Friday night I was at the hospital until 12:30AM trying to get Nick settled. On Saturday night, Dr. Frosty was actually the on-call fellow. I was so happy about this because I knew he would listen to me and I knew he would try to do something when he saw how hard Nick was having to work just to breath. And remember, this is all with Nick already on the ventilator.

They did a CXR which did not show anything. His monitor and respirator numbers did not show anything, and yet Nick continued to struggle to breath with every breath. They finally drew a blood gas and found that Nick's carbon dioxide level was very high. His venous CO2 was 70! His arterial CO2 was 62! Both very high numbers and his pH was borderline at 7.30 and 7.32. This number should be at least 7.35. Dr. Frosty had the respiratory therapist come in and make some changes on the breathing machine and then it was decided that Nick would get some mega-drugs to knock him out for the night and let him sleep. So last night he finally slept and I went home around 1Am to try and get some sleep. Pretty much every time I leave there at night I just cry myself all the way to my car. It is so hard to leave him like this, knowing that the least little activity could put him over the edge into another bad breathing spell that will make him air hungary all over again.

We then get a call from the hospital at 0730 on Sunday morning telling us that Nick had dropped his BP very low (most likely due to the sedation) and they had to give him fluid and put him on an IV drip to help his BP stay up. Glenn & I got up and headed for Hopkins. When we arrived Nick was actually awake but still very agitated, not able to breathe and asking for more medicine. It just breaks my heart to see him this way. I don't know what we are going to do. This latest round of breathing problems has really brough Nick's spirits down. He cannot focus on anything but breathing and trying to stay calm. I don't know WTF is going on with his lungs and apparently no one else does either. It seems he has been getting worse and worse with each passing day. Nick is not sure what to do either...when he feels this way, he doesn't want to fight anymore. He told us how tired he was and then he told us how he just wants to go home!! Oh my God what I wouldn't do to get him out of this place and bring him home where he could watch his birds, feel the sunlight through the window and just be home! It has been so long. I cannot believe that we have spent almost the entire summer in the hospital.

So on Sunday morning, the pulmonary doctors decide that one theory is that Nick's trach is too small and it needs to go up to a bigger size. Now he has had the #6 trach since it was changed on 7/23! Why now are we just coming up with this theory? I am once again not buying wha they are selling. But, once again, we are in a position where the doctors are trying to get Nick to try something with the hope that this will "fix" the breathing problems. HA!!!! If only it were that easy. There was no attending in house today (weekend...all work ceases until Monday) so Nick had to wait until Monday to go to the OR and get the trach sized up to a #8. In the meanwhile, they have put him on a slew of drugs to make him so sleepy that he doesn't feel anything or the air hunger feeling. They have him on Propofol (the MJ drug), Fentanyl, Ativan, and Haldol! All of these meds are being adjusted upward or downward depending ou what is happening with his level of agitation, BP, fluid status etc. It took most of the day, but he finally settled down to a place where his numbers are good. I am very upset at the rapid rate of Nick's decline. I am very upset and sad to have to go out and beg the doctor to come in an spend some time talking with me in order to learn about what is going on with Nick. His left chest sounds terrible with decreased breath sounds and lots of end expiratory wheezing. He is still gettinghis nebulize treatments, but, he gets them every four hours now.

After they take Nick and put in the #8, I am not sure what is going to happen. These questions are best left unaswered for now. All I know is I feel like all of our hopes and dreams for Nick's recovery are being sucked out of the vortex that is hislife right now. I am grieving for so many losses in Nick's life right now, I don't know how much more pain any of us can bear.

Nick is pretty much bed bound right now. He is on medications to numerous to mention. He had a fever two night ago, no one knows much about that either. All the promises that were made to Nick about speaking, eating, traveling, and being able to use the bathroom have proved to be empty at best and a cruel joke at worst. Glenn & I spent most of the day on Sunday having our hearts broken as we stood at Nick's bedside trying to cope with even the thought of losing this wonderful man with such a beautiful soul and mind. It is unthinkable and unimagineable and the pain is almost unbearable. How is it possible that this gets harder?

I am so tired right now I can't really even think straight. I keep falling asleep as I write this so I need to go to bed. I will try to update during the late afternoon or into the evening on Monday.

I know everyone has been storming Heaven with their prayers for Nick. Now more than ever we need everyone to pray for Nick's lungs to heal.

A Frail Branch

“We have not wings we cannot soar; but, we have feet to scale and climb, by slow degrees, by more and more, the cloudy summits of our time.” ~Henry Wadsworth Longfellow

All I can say is that Nick's fight continues. The last two weeks have been extremely tough. It seems there is ALWAYS some new twist of fate that must be dealt with in one way or another.
Despite three semi-"quiet" days, Nick is still trying to regain his balance on this precarious perch.
Nick remains on the ventilator. Nick's lungs have not really been stable enough to attempt any weaning. It is unknown at this time if Nick will ever be able to be off the breathing machine for any length of time. Most of the things the doctors told Nick before he got his tracheostomy have not even come close to being a reality, like speaking, eating, weaning off the vent, and/or any kind of activity. The doctors made all these things sound like they would be such easily obtainable goals. However, at this point nothing is "easy" for Nick. I am still hopeful that Nick will eventually make strides towards making some of these goals a reality, but, it will take lots and lots of time and hard work, if his body cooperates.

This admission, now going on sixty days, has felt to me like Nick has been caught in the eye of a storm. It is like when you are out in the ocean and you are trying to make your way to shore and you get caught in that place where you can't get in or out and the waves are coming too fast and you keep getting knocked down over and over again. At this point, you cannot think about anything except what it takes to survive in the moment. I am praying that Nick has finally been spotted by a lifeguard and dragged to the shore. Now perhaps he will have time to catch his breath, rest and heal. Only then will I feel like we can truly evaluate where we are, where we are going and how long it will take to get there.

Nick continues to battle an assortment of infections that are very worrisome. The longer Nick is in the hospital the more he is exposed to "hospital acquired" infections. He is currently being treated for the fungus in his lungs(Aspergillus ustus) and an assortment of bacterial infections including Staph epi, C. diff, Klebsiella, and Pseudomonas. Nick is still on a slew of intravenous medications to kill all these different bugs. He had fever as recently as several days ago and therefore, he has just been really wiped out. Nick still has a horse-size chest tube in his right chest necessitated by the doctors puncturing his lung during the thoracentesis that was done last week. This fluid was NOT infected after all, but, now Nick is having to deal with the pain of this tube while we wait for the lung to return to normal (which with Nick's lungs is always an iffy proposition at best). I don't understand what makes the doctors think his lung would just bounce back to "normal" when the lung was not normal to begin with.

Nick is also still having trouble with his feeding tube. He had to travel to east rat's ass to get a test to make sure the tube was in proper position. This required another transport by the purple team. Once again, Nick had some trouble with his breathing while returning from the test, but, I won't get into those details now. Suffice to say that the feeding tube was given the OK. Nick's tube feedings were restarted briefly, but, now his bilirubin levels have shot up and the doctors are concerned that he has some gall bladder/biliary malfunction going on so Nick is currently awaiting a liver ultrasound. Feeds have to be held for this test, so once again Nick is without the nutrition and calories he needs to fuel his body and his brain.

The day to day, hour by hour, experience of Nick's day is unimaginably difficult. Nick's body and mind need time to heal and repair. I know he is tired of being "sick" and he wants to be out of the hospital! Being in the hospital this long is like an anchor just weighing down the spirit and the mind and yet, Nick remains steadfast in his goal to get well. Every day I am trying to think of new ways to bring small joys to his existence within the four walls of his hospital room. He always brings joy to my life with his smile, his honesty, his bravery, and his beautiful soul. Despite all the trauma he has been through, there are moments I experience with him every day that remind me why I am so happy to have him in my life and I will thank God for every minute.

“Be as a bird perched on a frail branch that he feels bending beneath him, still he sings away all the same, knowing he has wings." ~Victor Hugo