How Sleep The Brave

Freedom Is Not Free

I watched the flag pass by one day.
It fluttered in the breeze.
A young Marine saluted it,
and then he stood at ease.
I looked at him in uniform
So young, so tall, so proud,
He'd stand out in any crowd.
I thought how many men like him
Had fallen through the years.
How many died on foreign soil?
How many mothers' tears?
How many pilots' planes shot down?
How many died at sea?
How many foxholes were soldiers' graves?
No, freedom isn't free.

I heard the sound of TAPS one night,
When everything was still
I listened to the bugler play
And felt a sudden chill.
I wondered just how many times
That TAPS had meant "Amen,"
When a flag had draped a coffin
Of a brother or a friend.
I thought of all the children,
Of the mothers and the wives,
Of fathers, sons and husbands
With interrupted lives.
I thought about a graveyard
At the bottom of the sea
Of unmarked graves in Arlington.
No, freedom isn't free.
~Kelly Strong

Hans Zimmer's "Stand Up To Cancer"

Two years ago on May 28th, 2008 Nickolas was diagnosed with leukemia. I was with Nick when he got the call from the first in a long line of insensitive doctors who told him on the phone, "We think you might have leukemia. You need to come to the hospital now." That began a journey through the world of blood cancer that is indelibly etched on my heart and soul. In September of 20008, Nick was in the hospital for only the second time. Nick had received what we had hoped was a "life-saving" cure, his BMT. On September 5th, 2008, Nick was transplant Day #9 and he had been in the hospital sixteen days. On that evening, STAND UP TO CANCER had its first televised program to help raise awareness and funding to fight all forms of cancers. I remember we had decided we were going to have a "Stand Up To Cancer" party in Nick's room that night. I don't recall it being much of a party, but, Nick and Kate and I were all there in Nick's room watching the program. There was a very surreal quality to the whole thing. Here we all were in the cancer center at Hopkins, here was our beautiful sweet Nick with leukemia. Here was Nick just nine days after his BMT. Here we were all shiny and new, praying and hoping that our Nick would beat this thing. In the battle against Nick's leukemia, we had only been through a few minor skirmishes at this point. We had no idea how cunning our enemy was and no idea how badly Nick would be wounded in this war. Listening to the stories brought tears to my eyes and pain to my heart. I prayed with all my heart that Nickolas would be a survivor, instead, he became a statistic; another life lost to cancer. The losses happen every day to young and old. So many families have lost loved ones to this horrible disease. This year Stand Up To Cancer will be having another televised event on September 10th. Please check out their website and read about the good work they are doing to fund cancer research. It is quite amazing. This song was written to help raise awareness. This video is Hans Zimmer's adaptation of the song. It says everything I am feeling about my sweet son and no words are necessary.

Flags In 2010

We who are left how shall we look again
Happily on the sun or feel the rain
Without remembering how they who went
Ungrudgingly and spent
Their lives for us loved, too, the sun and rain?
~Wilfred Wilson Gibson

Today at Arlington Cemetery the "flags-in" ceremony will take place at 4PM. Soldiers from the 3rd U.S. Infantry Regiment (The Old Guard) will be joined by service members from the U.S. Marine Corps Ceremonial and Guard Company, U.S. Navy Ceremonial Guard, U.S. Air Force Honor Guard and the U.S. Coast Guard Ceremonial Honor Guard in placing more than 250,000 grave decorating flags at Arlington National Cemetery. The flags will remain through Memorial Day.

On thy grave the rain shall fall from the eyes of a mighty nation! ~Thomas William Parsons

No May Flowers

This photo was taken on May 25th, 2009. Nick had only been home about twelve days. His head was still bald from the effects of the radiation treatments in April and of course, he had to wear the oxygen continuously. This was a rare moment when Nick actually was able to go outside and enjoy not being cooped up in the house or at the hospital. If I didn't know better, when I look at this picture, I might be able to convince myself that Nick was actually getting better; but, this was far from the truth and looks can be deceiving. Although Nick looks very pale, he seems to be relatively comfortable. However anytime Nick would move he would get into significant breathing distress. When Nick was sitting still or lying down, his lungs could manage (with the help of oxygen and an increased HR) to questionably meet his bodies demand. Nick's continued weight loss and inability to gain weight were also a significant indicator of the degree of Nick's lung damage. ANY kind of normal activity of daily living would cause Nick to rapidly decompensate, therefore, he was not able to do even the most simple tasks of self-care. I do not believe ANYONE at the HOP understood the extent of Nick's deterioration before they discharged him from the hospital both times in May!

Much earlier that day, Nick tried to get in the shower and sit and wash up. Pretty much from the moment he got in, he started breathing hard and feeling really bad. I helped him wash up as fast as I could so he could get out. He was SITTING on a shower chair with his oxygen on full tilt. He couldn't even breathe let alone wash up. His color was changing in front of my eyes. He looked so bad I was afraid he was going to pass out in the tub. Nick NEVER got a shower or normal bath ever again. Sometimes when I get in the shower this memory comes back to haunt me and I just cry and cry and the water washes away the tears but not the sadness and grief I feel for my poor sweet Nickolas and all he suffered...how even the simplest of things were taken from him. When I read my notes from this day it just breaks my heart. The shirt Nick is wearing is folded up on his bed. I cry and hold it close to me most every night before I go to bed. His posture shows a position that people often take subconsciously to help air move in and out of there lungs more easily when there is a problem with breathing or oxygenation. It has been very hard for me lately. I don't know why. All I know is that I carry this deep sadness with me no matter what is going on in my life. I miss my sweet boy so much. Here are my notes from that day.

1. RESP STATUS:
Nick increasing more SOB, with HR baseline elevated. Increased stress with activity, HR up, RR up, WOB up and having to rest a lot. Increasing O2 demand at rest and w/ activity. Spent most of weekend on 4-6L

93-94% on 4L w/ HR 130 bpm RR = 28/min. 94-95% w/ HR 108-114 bpm

Still w/ junky cough despite dosing w/ cough syrup for past week.

BS on right side diminished and hyperresonant BS especially in RUL; crepitus seems to be decreasing but still w/ audible crackles scattered throughout lung fields.

Exp wheezing noted on RUL

2. SHOWER - Nick had breakfast in bed, then planned to get washed up. Rested in bed for quite a while (hour to hour and a half) Then Nick decided that he had to use the BR before getting in shower. When done, Nick sat on chair in tub, I had to basically wash him up. He was VERY SOB THE ENTIRE TIME! RR WAS UP AND HE WAS VERY UNCOMFORTABLE ON 6L NC!! The whole process took 30-45 minutes.

3. Appetite good, but no weight gain.

4. Started Nystatin swish & spit due to thrush in back of throat.

5. PREDNISONE - decreased to 40mg/day since Saturday, May 23rd. Question if Nick's lungs are tolerating this decrease.

6. Nick very pale. Not sure why!!

7. Email to Dr. Pants....he wants Nick to come down to the Hop tomorrow to get a CT scan and start back on higher dose steriods...Nick not happy about this. Not sure what he will want to do...I hate steroids!

What's Behind and What's Before

Sara is graduating from college today. She will be receiving a Bachelor's of Social Work from University of Maryland at Baltimore County. I am so proud of her and I love her so. Sara is my sweet little girl and I cannot believe she is all grown up. How does the time go by so fast? This fall she will be heading back to school at University of Maryland at Baltimore to get her Master's in Social Work. Sara was accepted into the accelerated program so she only has to take one year of graduate courses in order to get her Master's. It took Sara a while to figure out what degree she wanted to pursue, but, there was never any doubt in my mind that she would eventually figure it out. Sara is a strong willed young woman who knows what she wants in this world and she is willing to work hard to reach her goals. She is truly loved by family and friends. She is loving and generous of spirit just like her brother. Sara has had more loss in her young life than anyone her age should EVER have to experience. I believe this has formed the person she is and has forever changed how she views this world. The fragility of life is not lost on her and she is very good at keeping what's important in the forefront. I wish Nickolas could have been here to share in this big moment. I know Sara wanted that too. She misses her brudder so much. My heart is broken every day by something that reminds me that my sweet son is gone from this world. Sara's graduation is one of those somethings that brings back all the pain of his loss. A reminder of all the future milestones and memories he will not be a part of ever again. That is so hard to really, truly understand. I am still trying to figure it all out. In the meanwhile, today's memories were made without brudder here with us. Sara is off celebrating with her friends. Glenn has gone to bed and I am sitting here crying and wondering how I will be able to keep doing this for the rest of my life.

I was thinking today, how it is already almost the end of May. Another Memorial Day is almost here. This Thursday will be "flags in" at Arlington Cemetery. I was thinking how last year at this time Nick was home on his brief respite between his two long admissions. Last year at this time, we were enjoying the final days of Nick's life at home and we did not even know it. And how two years ago in May of 2008, it would not be long before our worlds would be blown to bits by the news that Nick had leukemia. It seems like a lifetime ago. It seems like just yesterday.
The memories and the moments of pain still bring me to my knees.

I love you my sweet Sara. I am so proud of you and I know you will have your brother in your heart and by your side as you travel through this life. I love you my sweet Nickolas. I miss you more than words will ever be able to express. I hope I can one day understand why you had to leave us behind. Right now all I know is it hurts so much. Please come home and see us. Mom

Nika

I decided to post this picture of a butterfly because it was taken by a person who came into my world through my blog. The photo was taken by Annie B. She too has a blog. Her son was also diagnosed with CML. He is doing well. He is around the same age as Nick. She has been so supportive of me throughout Nick's illness and since Nick's death. One time she sent me flowers. Imagine my surprise when these flowers showed up on my doorstep! I was so touched that she would reach out to me like that. One time she sent a beautiful crystal which reflects the sunlight and reminds me every day that people do care. People come into your life when you need them I guess. I don't quite understand it all. I just know that many "strangers" have reached out to me and offered their hand in comfort and kindness. I am so grateful for that. I have discovered that going through grief, experiencing this "child-loss" is very isolating. I never really got that before, but, I do now. I don't understand all the reasons why...I am sure I am the cause of most of it.
I don't know what I want or need. I feel like I am completely and utterly lost at times. I am most thankful for the people in my life who have figured out a way to reach out, who have figured out that fine line between being persistent versus being intrusive. I do not want to be alone in this.
I need people who can listen to me. I need to talk about Nick and know that EVERYONE loved him, misses him and wants to help us keep his memory alive. I cannot be around people who do not understand these things. I am always going to be sad. When you lose that most precious little being that you held in your arms on the day he or she was born, their is no way you are not going to be forever changed by that experience. There is no way your heart is not going to break every day for the rest of your life. There is nothing anyone can say to make it hurt more. And yet it seems people are afraid and they don't know what to say. Saying nothing is worse than saying something. Trust me on this.

Losing Nick is in the forefront of my thoughts most every day and every night. I NEED to talk about so many thoughts and feelings. After awhile, the pressure just builds up. That is why I look forward to going to my Compassionate Friends meetings. These are people who know what I am going through, they know what I am feeling, they have walked in my shoes. They are still walking in those shoes. I don't feel like I am crazy when I am with these fellow child-loss survivors. I wish I could explain how good that makes me feel. The meetings can be very sad. Everyone there has lost a child. In my group, for some reason, everyone there has lost adult children. Some of us are still within the first year of loss, for others it has been much longer, and yet, the pain and the feelings are universal. The butterfly is used by the Compassionate Friends group. Here is a description from their website.

Why Butterflies?

Since the early centuries, the butterfly has symbolized renewed life. The caterpillar signifies life here on earth; the cocoon, death; and the butterfly, the emergence of the dead into a new, beautiful and freer existence. Frequently, the butterfly is seen with the word "Nika," which means victory. Elisabeth Kübler-Ross movingly tells of seeing butterflies drawn all over the walls of the children's dormitories in the World War II concentration camps. Since Elisabeth believes in the innate intuitiveness of children, she concludes that these children knew their fate and were leaving us a message. Many members of The Compassionate Friends embrace the butterfly as a symbol--a sign of hope to them that their children are living in another dimension with greater beauty and freedom - a comforting thought to many.

When I first joined the group I was not sure if I would like it. I did not know quite what to make of all the symbols and ceremonies and meetings. Now I feel like this group is a lifeline for me. If I hold on long enough, perhaps, I can pull myself to a safe place where I can figure out how to live in a world that does not include my only son, my sweet first-born child, Nickolas. I love you always and forever Nick. Please come home to see your Mama.

"A butterfly lights beside us like a sunbeam
And for a brief moment its beauty
And its glory belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it." ~Author Unknown

Fish & Whistle

In September of 2008, Nick was still recovering from his bone marrow transplant. I remember the one thing he kept talking about doing when he got out of the hospital was going fishing with his Dad and Uncle Steve. Of course, all I could do was worry about all the bad things that might happen, like being out in the sun, which was bad for his skin and any sunburn could have triggered GVHD in his skin. I worried about his low counts and his weakened immune system and pictured all the germy things he would be touching. I worried about him getting a hook stuck in his finger. I worried about Nick getting fatigued from over doing things too early and that causing him to have a setback. .I kept thinking about the time Glenn took Nick out on a boat with his brother. Nick was very young, maybe four? A storm started to kick up and just as they began to head back the engine on the boat gave out. The boat was being tossed and turned by waves and Glenn told me later he was very upset. Nick was wearing a life preserver and clinging to some aspect of the boat for dear life. They did get home safe and sound and I only found out all this after the fact. But, it scared me so much to know my little boy was in danger! This only confirmed and justified in my mind all my concerns and worries. I have always been a worrier. I cannot seem to help myself.

I did not think about all the joy this fishing trip would bring to Nick. I did not think of the peacefulness of the water. The stillness and beauty of the landscape around him. The happiness of being with his Dad and his Uncle and enjoying some "down" time from all things leukemia. I knew that Nick would love going fishing. I just wanted him to get stronger first. I never thought Nick would be so so sick! I never ever thought Nick would have so many disappointments as time went by. I never thought the list would be so long. I never thought it would hurt so much every time I think of all the things my poor boy didn't get to do. Was I wrong to worry? Should I have encouraged Nick to throw caution to the wind knowing he might be putting his life at risk?
We did the best we could with the information we had at the time. We thought we would have more time to be together, to share, to talk, to hug, to smile, to tell stories, to go hiking, to go camping, to listen to music, to sing songs and weave new tales, to go fishing, to make new memories that would last us for the rest of our lives. That time was not meant to be. Those new memories will never be made. All I have our the old ones and I never realized how hard it is to remember the old ones. I have no video of Nick when he was young. We could not afford a video camera back in the day. I have nothing except pictures and my weary brain. I feel like whole sections of Nick's life are missing from my memory, especially when he was away at college. He was there for five years and for four of those years, he rarely came home. So many lost opportunities.

I miss you with all my heart Nick. I cannot believe you have been gone from us for nine months.
It hurts so much. I long to see you and hug you and tell you how much I love you my son. Your death still haunts me and tears at my heart. I am tired of living in this world without you. Please come home to your Mama.

"Father forgive us for what we must do
You forgive us we'll forgive you
We'll forgive each other till we both turn blue
Then we'll whistle and go fishing in heaven."
~John Prine

Mother's Day

I was blessed with two wonderful children who have brought so much joy to my life. I thought I would be watching both of them find their way through this world. I thought wrong I guess. Nickolas is gone forever from my life. Nick doesn't need his Mom anymore. Mother's Day will always bring bittersweet memories now.

Last year, Nick was once again in the hospital on Mother's Day. He had to be readmitted on May 9th. My Mom, Nick's grandma, reminded me today of the story of that day. Nick was so upset to go into the hospital because #1 - he had just gotten out of the damn hospital three days before and #2 - he had planned a Mother's Day breakfast at our house for that Sunday. Glenn was going to cook a fancy breakfast for all of us including my mom and my sister for Mother's Day. Nick was so excited about these plans and he really did not want to go to the hospital because he so wanted to have this breakfast, with "three of his favorite girls." Nick had to go to the hospital because the air in his chest had come back. We tried to recreate the Mother's Day breakfast in the hospital, but, nothing in the hospital is ever quite the same as when you are home. Just another disappointment on a long list of many.

The other day I was cleaning out another spot in my house and I found some Mother's Day cards that Nickolas had given me a few years ago. I cannot tell you how much having those cards mean to me. Nickolas wrote in the cards and they break my heart to read them now. But, the old cards from Nick are the only ones I will ever have. I will never get another Mother's Day card from my son.

The picture above was taken in late May 2009, after Nick came home from this week long May admission. I look at this picture and I see my babies all grown up. I see how much they love each other. I see how bravely they are each hoping that everything is going to turn out alright. I also see the stark contrast between a healthy Sara and a very sick Nick. I look at this picture and the harsh reality of the toll Nick's cancer has taken on him are obvious. Nick's color is so pale, his face swollen from steroids while his body was wasting away, his head bald from chemotherapy, and the latest insult, the oxygen needed to help Nick's breathing due to the damage in his lungs. The pain this causes in my heart will never cease.

To My Son

Missing you with all my heart.

Out of time, we were

Torn apart.

Hard to know just where you are, and yet

Each night I see a star,

Reminds me you are always near, yet

Still I cry my sorrow's tears.

Dearest son, my life's sweet joy

Always you will be my boy.

Your Mom loves you.

Lost Hope

On May 5th, Nick was finally discharged home after being in the hospital for 58 days. Nick left the hospital on oxygen, unable to walk more than a few yards without getting weak and short of breath. He had to ride in a wheelchair on all our trips back and forth to the hospital. We had a handicap hanger for the car. Nick would only be home for three days before he would have to return again for another week due to his pnuemomediastinum comiong back! Here are the notes I wrote on his first day home.

1. Nick slept OK through the night on 2L NC, got up later, laid in bed w/ Sara for a while.

2. Appetite good t/o day. Needs to push fluids though. Drank his allotment of water and then some w/ other fluids.

3. RESP - seems to be coughing more than prior to discharge. Spent most of day on 2L NC, however, increased RR 28-38 with activity. Nick states he seems more tired and getting more SOB with activity today. Sats on NC of 2L running 93-94%.

Lungs sound audibly junky and questionably wheezing ?? Listened w/ stethoscope and did not hear any wheezing, crackles or other. RUL and RML remain diminshed. Nick using inhaler t/o day.

When taking walk w/ Zeke - Nick walked on 6L, but, came back very SOB, pale, breathing fast 36-38. Sats down to 90%. HR up to 130's. Wondering if HCT low??
Felt like he was working hard and felt like he didn't go that far. Seems to me like his WOB is increased as compared to that of hospital?? Especially since he is walking on higher liter flow. Nick felt like legs were unsteady and that is why he came back.

4. Zeke out to visit in afternoon, spent a good amount of time hanging w/ Nick

5. Checking glucose - needed insulin before lunch and dinner.

6. Started Mg oxide tabs - watch for diarrhea!!

7. Nick's left arm very bruised up and down length of arm and area of pressure dressing.

8. When Nick was getting in bed, noted his left foot was paler than his right foot. Why??
Right foot appeared slightly ruddier.

9. Companion chair was delivered today. Finally have everything, need to pick-up rx. from CVS tomorrow.

I find this so sad. Nick was already doing poorly after his first night home and yet we still had hope that he would get well. When you think about your child dying, hope is all you have.

Madness of the Heart

These pictures were taken towards the end of Nick's fifty-eight day admission. The picture with Grandma was taken down in the lobby of the Weinberg center. Grandma came on the weekend and we all went down there so Grandma could play piano for Nick. I know Nick enjoyed listening to the music. And yet, I know he was sad. I am sure he was scared. I wonder what was going through his mind at this surreal point in his life. I can only imagine. My God what are we all doing in a cancer center, playing piano and singing songs, while I sit here in a wheelchair with oxygen on my face because I can't walk and I can barely sit here and just breathe.

At this point, Nick had been through so much and still no one knew for sure what was wrong with Nick's lungs. The theory was that Nick's lungs were being attacked by his new marrow and that he had lung GVHD. The autopsy of Nick's lungs showed that EVERYONE was WRONG about that! Nick did not have lung GVH at all!!!!! Compared to earlier days of this admission with the fever, the low counts, the radiations treatments, the thousands of medications he was having pumped into his body, and the constant scanning and testing, Nick actually "appeared" to be somewhat improved. However, his breathing status was not at all improved. It was only getting worse.

The patterns were there, but, no one chose to see them. With each day that passed, Nick's lungs were being insidiously damaged. At the end of this admission, Nick could still get out of bed to sit in a chair and walk to the bathroom in his room, but, he had to be on oxygen. If he was still and quiet, the demand on his lungs was less and therefore, it seemed he was OK. But when Nick would get up to walk a lap around the hallway, he would return to the room breathing so hard it was frightening. His respiratory rate would be up in the 30's, his heart rate would get up into the 130-140/minute range (Nick's HR had been running high (114-120bpm) for months due to his undiagnosed hypoxia!!!! (A normal adult resting HR should be 60-80 bpm.) Nick's high heart rate was a compensatory mechanism; his body needed more oxygen, the body could not get more oxygen, therefore, pump what you have around faster!

Because Nick was young and his other major organs were strong, his body did amazing things for a LONG time to keep him going.If had been older, the deterioration would have happened faster. After his one lap, Nick would have to sit for five to fifteen minutes to recover enough to walk another lap.

I remember distinctly the nurses blaming this "shortness of breath" on Nick being out of shape, even at this late date in time!!! Shortness of breath is an UNDERSTATEMENT of the degree of respiratory distress that ensued whenever Nick tried to do ANYTHING that involved MOVING! Which is almost everything in life if you hadn't noticed.

But, somehow this was all OK and Nick was sent home like this....thinking that this would be able to be fixed and he would return to his normal self! Nick was never told that his lungs would only continue to get worse.

The doctors were trying to blame Nick's lung damage on the GVHD even though Nick never had a serious case of any kind of GVH. At the end of this admission, they did a liver biopsy, because I think the doctors thought for sure they were going to find he had liver GVH as well....NICK DID NOT HAVE LIVER GVH EITHER!!!

When they sent us home, there were no fond farewells. There were no discussions of death or dying. There were no statements like those listed below.

"Sorry Nick there is nothing else we can do for you."

"Nick, get your affairs in order because it won't be long before you are outta here."

"Folks, it's time to look into hospice care, because your lungs are on the fast track to hell in a hand basket and there is nothing that will fix these mother's, so plan how you want to die."

"If you keep coming back into the hospital, things won't go well for you. So stay the f*^%ck home."

"Take the time you have, get in your wheel chair and roll as fast as you can to some sandy beach and watch the last few sunsets you will ever see in your life."

"Sorry we didn't figure this out sooner Nick, but, your lungs are for shit and we didn't see this coming, and we don't know what caused it, and we don't know how to fix it. So....golly gee we feel bad about this and all, but, oh well thems the breaks kid. Get out....we need the bed!"

"We don't really think that physical therapy or pulmonary rehab or photopheresis is really gonna help. These treatments will be a LOOOOOOOOONG shot! Odds are this is NOT going to work, so don't waste the precious time you have driving back and forth to this dog and pony show we call a hospital!!! Hell no! Go do what you want to do NOW! After all Nick, the least we can do for you (oh yeah and for the too bitchy, pain in the ass Mama Bear person) the LEAST we can do is be honest with you about our failures!!!!

God, how I hate them all for taking my beautiful son from me. And if they didn't take him then who the hell did? Who is responsible for this? Why? Why? Why? Why did Nickolas have to go through all of this torture and suffering for nothing? I am so sorry my sweet Nick.

“Hatred is the madness of the heart” Lord Byron