Five NEGU Years

Never Ever Give Up

I’ve been working as an RN since 1990. About 1/2 of my career has been in either dialysis or the neonatal ICU. My favorite by far is the NICU. I love working with the tiny babies. I couldn’t have seen this coming or predicted I would like something like this, but it is so heartwarming to me, most of the time.

As many of you know, I’ve battle cancer twice myself and it is so hard. My first battle lasted 8 months in 2008. My second battle, started June 2014 and is ending about now with this post. It has been a slow recovery after my stem cell transplant.

I work with an RN named Linda Ahern. I’ve watched with a sad heart as she and her family have fought for their son’s life. I went to work Super Bowl Sunday and saw Linda in the break room before our shift began. Busy place. Lots of energy and activity buzzing around as we gathered in anticipation of a long 12 hour shift and the good food we all brought to celebrate a game we couldn’t watch ourselves.

Linda doesn’t have the opportunity to work often. She’s busy with her children, especially with the intensive care of Micah. You see, Micah has neuroblastoma, a cancer that ravages children and their families.

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Micah Ahern, battling neuroblastoma for five years

I have watched with a profound sadness for 5 years as Linda and her family have fought this dreaded disease. Their battle is marked with sheer determination, true grit, overwhelming faith, and a genuine heart. I have nothing but the utmost of respect for them and all they have endured.

Their story is coming to a conclusion soon. After a long five year battle, Micah’s fate is looking grim from an Earthly angle. To say they have fought the good fight, would be an understatement. He has undergone the usual (and several cutting edge unusual) medical tortures, the fruit of which has saved many lives. It isn’t looking hopeful for Micah, though. They are down to last choice options and the outlook is grim.

While their hope (and mine) is not wholly on this Earth, we aren’t inhuman. We share a common faith that our true home is in Heaven and we have a God who loves us immeasurably. We live as people who have faith in goodness and a Good God, while living a world of sickness and pain. Our religious beliefs don’t stop the sorrow we feel, the immense pain that comes from illness, sickness, disease, and an unfair unjust life.

No one is immune from the problem of suffering and pain. Even Jesus wept hearing of the death of a friend of his. Even Jesus cried out in agony, asking His Father if there could possibly be another way. Even Jesus cried out in anguish “Father, why have You forsaken me?”

I have news for you people, faith in a good God and unjust outcomes in this life are compatible. One does not exclude the other. I went through a phase where I lost my faith after my first battle with cancer. I have since had Mercy shown me in ways that are hard to express.

At any rate, I wanted to ask you all something. What have you done in your last five years? Where have you gone? Been out to eat much? Had any vacations? Been through some hard times? Trust me, I’m not attempting to manipulate you emotionally. Just asking an intellectually honest and emotionally engaging question. I know what I’ve been up to. I’ve also had the difficult honor and privilege to watch this family undergo a terrible battle.

Linda and I had a moment to catch up with each other before the shift began. We looked at each other and got into our cancer bubble communication rather quickly, despite the buzz of the closed-in busy room surrounding us. Cancer people are like that. Talking food and typical things one moment, discussing matters of life and death with unusual unfortunate insight the next. We understand things that others can’t. I wouldn’t wish this knowledge upon others. Yet we NEGU.

Never Ever Give Up.

We shared our catch up right quick stories. I have felt so good recently. January was the best month I’ve physically felt since June 2014. That is a long time people. I am grateful for feeling so well. I can’t tell you how I was buzzing around work, making my coffee announcements, and consciously celebrating how good I felt. What a wonderful gift, just to feel good.

This last week, however, I slid downhill physically. Not sure why. The day before our conversation, Saturday the 6th of February, I almost couldn’t work. I felt so extremely fatigued and nauseous; it was overwhelming. I took my Zofran (antiemetic) and kept going, pressing through the shift. By the time I caught up with Linda and we spoke, I was doing a bit better and felt encouraged.

Linda and I touched on many things. We spoke of how we feel connected to our God, more alive now than ever before, how life is going well spiritually and emotionally, and how we also feel understandable contrasting emotions of hard, painful realities. She shared about Micah and where they are at right now. I shared how I was wondering just 24 hours prior to seeing her if this sharp downturn might be the signal of my cancer returning. In my case, if it comes back, it won’t take long before I meet my Maker. That was on my mind most of the 12 hour shift, wondering what my next few weeks of my life could look like. Yet I was buoyant on the outside, because I have hope. Linda and I covered a lot of territory quickly and with a deft skill that only comes with time spent in the cancer camp.

Micah’s outlook isn’t good. Despite the hope, the faith, and the NEGU attitude, he is undergoing last efforts to provide some quality of life with a super slim hope for a physical healing from medicine. This little guy is so amazing. This family needs to be put in the Smithsonian Institution as the model family.

Five years people, five years. They have fought, contended for, and stretched beyond the point of endurance for five years. Non-stop hospitalizations, endless amounts of chemotherapy, all the while forsaking the normal rhythms and rituals a family should enjoy. Their stress should come from the lack of time and frustration of getting ready for a vacation, or finding the time to balance between activities, family time, duties, disciplines, and desired pursuits.

Yet these things are denied them for five years. They stood not too long ago outside a lead lined room for days, watching Micah undergo a cutting edge radiation therapy.

Alone.

Micah was all alone in this room. A small tired buoyant boy suffering seemingly unending circumstances for a hope, The Hope of a better life. Alone in a specially designed room. That is an experience I wouldn’t wish on anyone, not a single person. I broke when I saw the picture his mom posted. This was one of those moments I moved from my normal “I can deal with all this” reality into a place of profound sorrow for one suffering. I weep just typing this sentence, thinking of being outside a window for days watching my child lay there with radiation coursing through their entire body.

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Micah undergoing treatment for neuroblastoma with I-131 metaiodobenzygluanidine (MIBG) therapy, which is a therapy that delivers radiation directly to cancer cells

Ever thought about doing something nice for someone? Ever doubt if your actions could make a difference? I tell you what, as one who has been on the receiving end of compassion and kindness, your every choice, no matter how small, is so meaningful.

I attached a video of the Texas Christian University baseball team doing something super awesome and kind for Micah and his family. This is a sure tear jerker moment. These guys didn’t have to do this, yet they took their time, energy, and money to bless this family unselfishly. They could have been doing any number of pursuits, yet they chose to do something kind for a family in distress.

Let me ask you, could you do something kind for someone? I have a few random suggestions you might consider. Why not forgive yourself for being a messed up person and having short comings? Why not forgive those around you who hurt you needlessly? Why not share some love and support for someone poor, or someone whose house has burned down? See the bum on the corner that most people look away from? Why not buy a cup of hot coffee and a breakfast taco and hand it to them.

Have an extra five dollar bill in your wallet? Why not go to his gofundme page and give just a little something. It might look like they’ve raised a lot, but I assure you from personal knowledge of this hell called cancer, I’ve been reduced to a position financially I’ve never faced before from my much shorter battles. Even yesterday evening, when my taxes were completed at 7:55pm by the tax lady, I was given the news I owe uncle Sam thousands of dollars in taxes, all because CIGNA will not hold out taxes from long term disability payments. I not only received a HUGE freaking paycut last year because of disability (and the year before that), but have to endure this final insult of scrambling to pay for taxes in the next eight weeks. I share this because it is the truth, a truth that caught me off guard and left me speechless for about 30 minutes. Then I got over myself and chose to be grateful for the untaxed income I did have while undergoing chemotherapy and a stem cell transplant. I returned to my attitude of gratitude after that short moment of feeling like I had my breath taken away yet again.

My issue pales in comparison to theirs, though. Their battle has been five non-stop NEGU years people. Five years of reduced income, five years of increased expenses. Five years of prayers, faith, heartache, hope, increased awareness of how fragile life is, and five years of a hoped-for healing denied to them.

And their reward is an article like this, kindness from others, and staring at a quickly arriving fate that I wouldn’t wish on anyone.

Say a prayer for them. Pass on some compassion and kindness to someone around you. Pray for others. Live out the greatest commandment to Love God, others, as self. And if you have an extra green bill you can spare, why not support this family that is facing a most desperate moment in their life? Send them a card, or pay it forward with kindness to someone in your own family.

Superhero Micah’s GoFundMe page  <–click here to see his GoFundMe page.

 

TCU Baseball Team Video with Micah  <– I’ve shared this link two different ways on this post, I can’t get it to view through my iPhone. Hope you can. If you can not, please get to a desktop or laptop and check it out. SO VERY worth watching.

 

About Robert I Baxter

Greatest Commandment is #1. Follower of Jesus, husband, father, RN, love photography, cancer survivor of Burkitt's twice (2008 & 2014). Stem Cell transplant November 2014. Work in a neonatal ICU.
This entry was posted in baseball, cancer, chemotherapy, Child, generosity, hope, kindness, neuroblastoma, TCU, Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

2 Responses to Five NEGU Years

  1. Brenda Hockaday says:

    Well said Robert!

    Like

  2. Teresa says:

    Very well said. Touching and true. Blessings to all.

    Like

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