Vortex of Grief

Every day of Nick's radiation treatments seemed endless. The worry list was endless. Would they get the dosing right? Would everything line up right? Would Nick's breathing be able to handle being strapped into that torture device for however long it would take on this day? How would he feel when he was done? How long would the mucositis in his mouth prevent him from eating? How much more weight would he lose? And the ultimate question, would it work? This is a poem I wrote one day while I sat in the basement of the Weinberg building. There is a waiting room there for family members and patients awaiting treatment. Many of the patients were there as outpatients and they had to change into a hospital gown and wait for their turn to be blasted. It was so sad and scary to sit there waiting for Nick to come forth from that horrible cave of darkness.

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Half clothed warriors
Fighting an unseen foe
Waiting to do battle
Suiting up in their armor and masks.

Lines of black and green traverse the skin,
As if the coloring book of a mad scientist or
Some child gone wild with magic markers.

Faces about the waiting room staring at one another
For understanding and support.
Some are hopeful with cautious optimism
Others are more battle weary and resigned to
The futility of it all.

The sign reads, "CAUTION"
"HIGH RADIATION AREA."
All who pass through these gates beware.
Your death or your salvation await you.

Enter the arena, armed with nothing more
Than free will and the desire to beat back
The enemy as it tries to envelope your soul.

Place yourself prone on the table, vulnerable
And alone. Your face pressed into the
Honeycomb mold that will hold you captive
For the duration of this round.

What is it like to see the "light" of the gamma rays
As they seek and destroy all that lie in their path?
Will all leukemia cells please report immediately
To hell's kitchen! Your table is about to be seated.

The fear is always there. What if this doesn't work?
What other dangers will now be lurking?
When will the side effects begin?
Waiting, wondering, preparing again.

Baby fine hair so carefully cultivated, soon to disappear.
A patchy reminder of things we would rather forget.
Gains so valiantly achieved blown over
like a tree in the eye of a hurricane.
No match for these photon forces.


Spiraling downward.
There is no end to the painful memories.
The warmth of spring does not reach to my heart.
I want my boy back.
Do you hear me? I WANT MY BOY BACK!!!!
Angry and saddened by the futility of this longing.
No answers to be found.
Spinning endlessly in this vortex of grief.

Longing of the Soul

This is my poor sweet boy with his "Woodstock" hair, trying to rest after his radiation treatments had started. I don't remember what specific day it was, but, I am pretty sure it was near the end of March 2009. His hair had started to fall out again due to all the radiation, leaving him with his little Woodstock poofies. Nick hadn't yet decided to shave it all off, that would come later in this admission.

On this date last year, Nick was still in Room 1 on 5B. It was the weekend and I showed up later in the afternoon with Aunt Barbara to find everyone gathered in Nick's room. Nick had gone into a breathing fit after a trip to the bathroom and they had to call the nurse and doctor to his room because he couldn't breathe! This was not the first episode breathing difficulty nor would it be the last. I remember the horrible feeling in the pit of my stomach when I showed up "late" for the first time since Nick had been admitted to find things going down the dumper. The doctor wanted to get some blood to check Nick's breathing numbers, but, I think he was so anxious and scared he didn't want them to draw it right then. Plus this test is painful; they have to stick a needle straight into your wrist while trying to find the radial artery which is like the size of a piece of thread. Nick was coughing and coughing and he couldn't catch his breath. The effort of Nick just trying to walk to the bathroom was all it took to send him into significant respiratory distress. And yet, throughout this admission and the months prior to it, the general reaction seemed to be..."Is this a problem?" Well this time, it must have been pretty bad, because everyone came a running and they couldn't blame it on me, cause I WASN'T EVEN THERE!!!! When I did arrive, I had no idea what had happened. It was very scary. They had to take Nick off his cannula and put him back on his high flow face mask at a much higher oxygen level. After some time had passed, Nick was able to catch his breath and settle down a little bit. I believe at this point we were already using the fan to blow on Nick to try and help him relax and cool down. I can't remember everything, I just remember how horrible it felt, the sheer terror of watching Nickolas go through all this and how awful it felt to be powerless to help him. To watch someone you love, let alone your child, go through this kind of suffering, well I can't begin to describe how much that hurts in my heart every day.

On that day, we did our best to push our fears to the back of our minds. We kept asking questions, we kept challenging the doctors to figure out what the hell was going on with Nick and his breathing. No one seemed to understand the severity of his lung damage at this point and they certainly did not know why. This was not their focus. They were focused on the leukemia and the radiation and looking for infections that were debated by their own infectious disease doctors. For us, there was nothing to do but keep pushing onward. I can remember this time like it was yesterday...all of it! This was about the time that Dr. Gallstone (formerly known as Dr. ??) showed up and made things even worse with his arrogant, supercilious and pompous attitude. Why did we have to deal with those kind of people when Nick was so sick and hurting so much? What lesson was I supposed to learn from that experience? I just don't even know what to say sometimes about all Nick went through at the hands of these punks! Definition of punk: a disrespectful, rude, or otherwise unpleasant person! (Now I don't throw all of the people at the Hop into this category...just a select few!) However, when someones life is hanging in the balance you shouldn't have to deal with any punks! As Glenn just threw in..."Life should be punk free!"

I miss my sweet boy with all of my heart and soul. I grieve for him today as I have done every day since his death. I am working hard at this grieving thing. It is exhausting work. I should not wonder why I am tired all the time. The longing I feel for my son is not something I can well put into words. I want to see Nick's face, see his smile, hold his hand and feel it's warmth, and hear his voice say, "I love you Mom." I know I am not going to get what I want.

“Prayer is not asking. It is a longing of the soul. It is daily admission of one's weakness. It is better in prayer to have a heart without words than words without a heart.” Mahatma Gandhi

“There is no past that we can bring back by longing for it. There is only an eternally new now that builds and creates itself out of the Best as the past withdraws.” Johann Wolfgang von Goethe

Radiation Sickness

As the days of March tick off the calender, I find myself falling farther down the rabbit hole of my own depravity. I am reliving the days past with sadness and regret, fear and anxiety and a longing for my son that will not cease. This picture only begins to touch on the reality that Nick was living as he remained in the hospital, now only day #17 of 58! Still very ill, fighting off leukemia cells in his brain and spinal fluid, fighting off infection with counts that had plummeted way too low and fighting the side effects of his radiation treatments, just to name of few!

On March 25th of last year, Nick was getting his seventh of thirteen radiation treatments. Radiation to this area is already difficult enough, but, Nick had to also deal with the additional burden of his failing lungs. I don't know how he did it, but, he did! Nick was so brave and such a trooper when it came to these barbaric methods of ridding the body of cancer. On top of everything else, the radiation was rough. On this particular day, the infamous "look" was in evidence and yet, people would still try to tell me he looked "good." You will notice the oxygen mask hanging from his neck. I can't remember why he had it off. He might have pulled it down because I was taking a picture. Last year, as Nick was going through all this, I never posted the "real" pictures that I had taken. I know Nick read my blog sometimes and I didn't think he would want me to put them up. Now I have no such worries or constraints. So harsh reality it will be. These are the images I cannot get out of my head. These are the thoughts that make me cry every day for one reason or another.

Today I decided to make one more attempt to do something with all the insulin Nick had not used. We had just had a new prescription filled, brought the stuff home, and NEVER used it! Never opened it! Nick went into the hospital the very next day! I called the Hopkins pharmacy to see if they could at least take the small individual needles back. They said they cannot. I understand this, but, it just kills me to throw all this stuff away. So I took out all ten of the insulin syringes and squirted out all the insulin. I thought about the waste of good medicine and the expense and then I thought about my poor boy and I just cried some more. The pain is raw and there is no medicine to fix this broken heart. The pain of missing my boy just grabs hold and pulls me down. I am powerless to keep it at bay and it saps me of all my strength.

Bystander

Battered and bruised you trudged through each day.
Sticking yourself with needles in the name of healing.
Having others stick needles into you and take your
precious life's blood from your body.
Tired and battle-weary, you fought on with endless courage.
You trusted them to heal you, to take care of you.
You let them irradiate your brain,
thinking you would be cured of this disease.
Poisons were poured into your system.
We prayed for the toxic concoction to find the right enemy;
instead, this dreaded chemical cocktail turned on you and ate you alive.
Every assault was borne with quiet dignity and reserve.
Your beautiful soul was the only thing they couldn't butcher
with their instruments of destruction and death.

I love you my sweet son. I have not yet learned how to live without your physical presence in my life. I still do not understand why this had to happen. I am lost without you in my life. Please come home Nick, our hearts are breaking every day. I love you always and forever, Mom

Ava H: Pink Princess, Inspirational Angel, Neuroblastoma Warrior

This is little Ava. She has been battling neuroblastoma since February of 2009. She relapsed this past December and is now fighting another round against this horrible childhood cancer. Please send your prayers for little Ava and her family. I believe the little guy in the video is Ava's brother Eli. They are so adorable. They remind me of Nick and Sara when they were little. In addition to more chemo and other treatments, Ava will have to have another surgery in a few weeks. She is an inspirational angel for sure!

Standing On the Edge

As I travel through the blogosphere, I discover others who travel the same road. They too have lost their precious children. They share their pain as they try to find their way. The article below is reprinted here with permission from the author, Mr. John French. He lost his seventeen year old son, Brandon, on July 30th, 2009. Mr. French is a grieving father and his words speak so eloquently to the pain of losing a child.

Taking a Rest on the Journey through Grief by John French

Grief is an incredibly difficult venture, a monumental climb from the pit of despair. It is certainly an exhausting journey. It’s a journey in which now, months after the death of my child, I realize that I haven’t moved at all.

Even though others may perceive me to be progressing, my movement is lateral at best. As the span of time increases, it becomes more and more difficult to lift myself up. The days slip by, but the moments never escape me. The more I struggle to hold on, the more twisted and frayed my thoughts become. There is a fear attached to moving forward, as if continuing on diminishes the importance of where we have been. Exceeding that is a heightened awareness that there is no going back. It is in these moments that I feel completely stranded. I wander back and forth on contemplation’s narrow shelf.

On one hand nothing exceeds the sheer agony of death; on the other, absence creates a tremendous depression. As I struggle to unravel the endless strands of thought that death has me spinning, it occurs to me that there is some stability in the place in which I stand.
I’m on an outcropping of complacency between the height of anguish and the depths of sorrow.

With space enough to linger, to contemplate, commiserate and catch my breath, I sort through my feelings. I find myself discarding unnecessary thoughts and reflecting on the little things that always make me smile. Flickers from the past ignite memories that produces a warm inner glow. And, even though the future is unfolding, within this space, it does not obstruct my view.

I think there are instances when it’s best to stay focused on where you are. The enormity of what lies ahead is too overwhelming and looking back will only bring you down. Considering how much we have already suffered, a break is certainly something we are due. Pausing doesn’t restore my motivation to pursue life’s summit, but it keeps me from going over the edge.

To avoid seeming as though I am overlooking the point of our sadness, I’ve decided to extend myself, and offer a line that is purposely crafted to be uplifting. I do this not only to reach out to others, but so I might feel secure within the space I’ve found to rest.

“The lariat of love is so immeasurable that it easily extends from earth into heaven. So unbreakable that it binds them together. If we gather the strength to draw our selves a little closer, we will see those on the other side are pulling for us."

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I am wondering how long one can live on an "outcropping of complacency" and what kind of life that would be? This was not the life I signed up for, but, now, this is the life I've got. Grief counselors will caution those grieving to live in the present in hopes of keeping the bereaved from becoming overwhelmed with an uncertain future. The problem is my future, my hopes and my dreams, died with my son. Right now it feels like this narrow shelf is all I have.

A Stony Path

If God sends you down a stony path,
may he give you strong shoes.

Last year, we spent St. Patrick's day in the hospital. Today would be Day 9/58! Nick's breathing continued to be an issue, so much so that we were worried that he would be able to tolerate lying face down in the radiation mask. Well Nick was determined and he said he could do it. So, Nick started his first cranio-spinal radiation treatment on this date one year ago. Looking back, I think we were all completely unaware that it was St. Patrick's Day, so deep were we into the unknown and the fear that this stony path would lead us nowhere we wanted to be. It seems like just yesterday that Nick and all of us were living that nightmare.

Dear Lord,
Give me a few friends who will love me for what I am,
and keep ever burning before my vagrant steps the kindly light of hope...
And though I come not within sight of the castle of my dreams,
teach me to be thankful for life
and for time's olden memories that are good and sweet.
And may the evening's twilight find me gentle still.

If I Could Go Back

Here is my sweet Nick with all of his crazy hair! This will be in stark contrast to his bald "cancer" head that will be shown here in weeks to come. In case anyone forgot, Nick was still in the hospital on this date in time last year. He was on Day #5 of 58 inpatient days! These five days were spent in fear and anxiety every day about the radiation treatments that were on hold due to all the breathing and lung problems Nick was having. I cannot begin to describe the awful, nauseating fear! This was actually the same day that I decided to spend the night with Nick for the first time because I was so frightened about his breathing status. He was still in the room in the back hallway and he was still being assigned the least experienced nurses on the floor. I feel the need to put down all that was going on with him, but, I won't because I feel there is no purpose. I know how horrible it was, I know how hard Nick was working for every breath. I know how indifferent the doctors seemed to be about the whole thing. God why did this have to be this way? Why do I keep rehashing all this you may ask? Because I have to...that's all. I have to find a way to go over until I don't need to go over it anymore. I have to be able to figure out why our wonderful Nick had to die this way. I somehow know I will never have an answer and yet I must endlessly torture myself. God help me. But, I will feel this pain until it doesn't hurt so much anymore. It will never go away. How could it? I am not stupid. I know what I know and I feel what I feel. The problem is I am trying to get YOU to understand what Nick went through, what I went through, what we all went through. Can you understand? Can you try? If you want to try you have to feel the pain! This is what I feel everyday. Am I cruel to want others to understand the agony of this suffering? Why do I feel so alone in this loss? What is the purpose of this suffering?

Today marks seven months since Nickolas has left us. Every day I stand in Nick's room and I look at his pictures and I cry. I play his music for him and hug his clothes. The other day I wrote this on Nick's dry erase board:

Nice and neat Nannerpus
Incredible and intelligent
Caring and cool
Krazy and kind
Ornery, yet overflowing with hugs and love
Loving, laid-back, and loyal
Awesome and admirable
Sweet, sincere, & stubborn

We love you Nick. We miss your beautiful spirit, your smile, and the joy you brought to our lives every day. We love you so much...Mom, Dad & Sara.

"I think I am beginning to understand why grief feels so much like suspense. It comes from the frustration of so many impulses that have become habitual...I keep on through habit fitting an arrow to the string; then I remember and have to lay the bow down." ~C.S. Lewis

"Healing moves at its own pace. What is a burden one day may be a gift another day."
Excerpted from the book, "Healing After Loss Daily Meditations for Working Through Grief" authored by Martha Whitmore Hickman

Super Pierce

I hope Nick is hanging out with little Pierce. I can see the two of them now running with the wind in their Superman capes.

Take good care of all the little angels coming your way Nick. I hope they make you smile every day. I love you always Mom.

The Beginning of the End

On this date last year, Nick was readmitted to the hospital. Nick had not been feeling well for quite some time. We had gotten word the month before that the leukemia cells were back in his spinal fluid and Nick had been getting stronger chemo into his spinal fluid for the past month or so. Just prior to this admission, the doctors told Nick that they wanted him to undergo radiation treatments to his head and spine. Our hearts were heavy at the thought of this treatment and all the potential bad side effects. Nick felt strongly that he wanted to do whatever he had to do to clear the leukemia out of his body. All these decisions were being made not knowing that his lungs were already falling apart.

In the meanwhile, due to the chemo treatments, Nick's counts had fallen and were refusing to come up. His counts were so low and yet no one seemed concerned or alarmed; whereas in the past, counts this low would have been cause for hospitalization due to infection concerns. Nick continued to have problems with his breathing. His heart rate and respiratory rate were elevated for weeks by this point. He was losing weight, his appetite was down and he was tired and fatigued all the time. Why did no one see this as a problem? Why couldn't anyone put all the puzzle pieces together?

Nick was admitted to a low risk room near the back of the unit. They didn't think he was very sick. They were wrong again. His breathing was very labored and it was on his admission vital signs that it was discovered that his oxygen saturation was way down below normal. At this point Nick was placed on oxygen, yet again, no one was too alarmed about this. There was just nothing. And so began the first of two horrible and long admissions. This one would last for fifty-eight days! Fifty-eight days on a downward spiral to the hell that would be the end of Nick's precious life. Back then we still had hope. Back then I thought I could protect my son. Back then, we had no idea of what was to come. Back then, we still believed in miracles.

"Keep a green tree in your heart and perhaps a singing bird will come" ~Chinese Proverb

Dreams of Loss

The problem with my dreams is that I don't remember them. I woke up this morning and half realized that I was dreaming about Nick. It wasn't what I would consider a "good" dream. Nick was very sick, his body emaciated and his spirit lost. I just remember trying to carry him somewhere and there was this sense of urgency about getting him somewhere safe. And then all I had in my arms was his box of ashes. And when I woke I was confused about what I dreamed and what it all meant. And I was sad, feeling that I was trying to somehow save him when there was no hope and I was just continuing his suffering. I miss my sweet son.

Still Swimming