Forever Changed

APRIL 7, 2010 -- The change had already begun. But this was the day when it truly became real.  The day the surgeon came to us, and with a simple gesture, confirmed that our lives would never be the same.

He used both hands to illustrate the size of the enemy. The demon that had taken up residence, and that they tried to evict. Cancer was the unwelcome guest, and my mother its unwitting host. 

That day we learned there was no going back. No way around this traffic jam. No detour. We were stuck. Worst of all, Mom was stuck.  Our lives, and, more importantly, her life, were altered forever.  She was in a war with the devil called cancer, and we were going to have to guide her through the trenches as best we could.

For years we would talk with her about her health challenges, and she refused to deal with them.  Aside from a nasty cold or bronchitis, she wouldn't charge into a doctor's office seeking help.  When we tried to convince her that she could be more comfortable, have less pain, discomfort, breathe easier with the right doctors and the right care, she would simply tell us "I'm 70!", as if that age marker meant it's all over - 70 - the end.

As it was, we were too late. The doctor's tried. She tried. We all joined in the fight. But there was no way out, and the demon, cancer, won.  And yet, she was so brave and calm, and accepting. She walked through it all with such grace. Forever changed. And now, forever gone.

Our lives are different now. Her absence always with us. Yes, her memories always with us, too. But there is no doubt about it. Nothing will ever be the same.

The Greatest Fan

There she is. The Packers' greatest fan. I will never witness anything about the Green Bay Packers again without thinking of her. My Mom.

Over the years her loyalty never waivered. She watched every game. She gathered souvenirs and mementos. She screamed and hollared "Go-Go-Go!" from her living room so loud they probably heard it in Green Bay.

She collected memorabilia. She had her photo taken with Chris Jacke. She had a room in her apartment dedicated to "The Pack". In it she hung posters, schedules, photos, a wooden hand-painted Packer on a swing suspended from her ceiling. She collected stamps, and any limited edition ornament, or keychain. She wore Packer jewelry - earrings with the logo outlined in rhinestones, a pin, something that blinked. She wore a Packer jersey and hat on game day, and for Halloween - going as none-other than the ultimate fan - herself.

She new the players. The plays. She knew the rules, and when the rules were broken. She knew a good call from a bad. She loved the game, and the team. Stood by them no matter what.

She reveled in their victories. Cheered loud and strong when they went to the Superbowl, and dreamed of seeing them go again.

This past year she battled colon cancer and lost. Late in the summer we met with the doctor to discuss her prognosis. To discuss what kind of time she had left. In the meeting she told the doctor she wanted enough time to see the Packers play another season. She wanted to see them go to another Superbowl. The doctor told her she might see the Packers play another season, but, well, the Superbowl was another matter. She laughed. He laughed. We all laughed.
It was a strange day.

Little did we know that day that she wouldn't make it to another season at all. Only two weeks later she was fading quickly away. Much faster than any of us would have hoped or anticipated. The day before she died the Packers played a pre-season game against the Colts. They won. Though she lay unconscious in a hospital bed in her living room, the tv set was on, and the game played as we gathered to be with her. When they won we told her so. The next day she died, and the Packers were short one incredible fan. On earth at least.

As the days moved on we cleared out her things. We sorted through her Packer shrine. Some things we shared, some we didn't. But every bit of it spoke to her enthusiasm for the game and for her team.

Throughout the season my sisters and I would comment on how well the team was doing. We would remark that maybe Mom was up there somewhere guiding the Packers to a Superbowl. We would joke that we could almost hear her cheering them on from somewhere in the crowd. That maybe now she was on the sidelines with our Dad, pushing them closer and closer to victory. Sprinkling some kind of magic over the field.

So far it seems to be working. Mom's favorite team is going to the big game. The Superbowl. Just as she'd hoped. Just as millions of other Packers fans hoped. A dream come true.

And yet, I can't help but feel melancholy. Sad that she didn't make it to see it here with the rest of us, on earth. Missing her every day. Thinking of her with every mention of the team, and the big game.

All I can do is hope that wherever she is, she'll be watching. My dad sitting beside her. Both of them cheering and screaming and yelling "Go-Go-Go!". Praying for a win.

I'll be praying, too.

A Diamond in the Rough

The waiting, as they say, is the hardest part. That's certainly been true in this case. It's been a long two weeks of waiting for the results of Nathan's biopsy to come in. Although the signs were pointing to a good prognosis, life can be so full of surprises, good and bad, that you can never be too certain. I admit it, I was obsessed day and night. I poured over websites about neuroblastoma, I read Wikipedia definitions multiple times. I read the blogs of others fighting the disease. I hoped, I prayed, and I enlisted friends near and far to include him in their prayers and wishes and dreams. And I cried. A lot.

Today was a long day. I knew that Nathan's results were due in. Unfortunately, I hadn't asked my sister what time they were to meet with the doctor. So, last night I tossed and turned. All day long (with apologies to my boss) I struggled to stay on task and not drift into bouts of fear and paranoia about the outcome. I heard nothing all day.

When I arrived home this evening, however, there was a message from my sister to call. Nothing else. I picked up the phone, then suddenly couldn't remember her cell number. I frantically looked for my address/phone book and couldn't find it. I thought, maybe, I could remember the cell, so I dialed it. It wasn't hers, but her husband's. He worked in a few pleasantries. But I wanted the news. Tell me.

As he filled me in on the Oh-So-Good news I burst into tears. The results: the tumor is definitely a neuroblastoma (and not something unexpected), Stage 1, Low-Risk. And the best news beyond that - NO CHEMO. Be still my heart. I have never been so grateful in my life.

I congratulated him. He told me more of the details, the doctors comments, the fact that they will be watching him carefully, doing scans every 3 months. They will continue with the infusions for the OMS that warned them that a tumor was possible. They will continue with the steroid injections for a time. The physical therapy, speech therapy, and so on. All of those things seem like status quo after this. The tumor is gone. He will live.

It is possible that it may recur. But based on the traits of the one they removed, anything additional will hopefully be treatable in the same way. And, with regular scans, they can catch it early, as they were able to do with this one.

As it turns out, they were nearby, having just come from the doctor. So I rushed out to meet up with them. To hug them. To see their happy faces. To see Nathan, and his big, handsome, brother Ben, play together, and laugh and giggle. To take a few pictures. How did I get to be so lucky, to be able to be with them on this momentous day? Yes, I am grateful.

It was a rough day. It's been a rough 12 months since this began. But the diamond is worth it. For he sparkles and he shines. But most of all, he warms our hearts.

And the sunlight danced upon his hair...

That curly hair, dappled with sunshine. Photos from a summer day not so long ago. A miracle in action, many months into treatment for OMS. That is Nathan. A bundle of laughter, and personality. A ball of energy. A delight.

I asked for your prayers. Your good wishes. Your kindness of the human soul, and you answered. Thank you!

Nathan's surgery went very well today. Could not have gone better, in fact. The operation lasted little more than two hours. They were able to remove the entire, walnut-sized tumor, and did so without any complications. All organs, and arteries intact. Hallelujah!

They also did a bone marrow test. A previous osteoscan showed no affect of the neuroblastoma to the bone, but this will give a definitive answer. Pray it's clean, clean, clean.

The pathology will not be back on the tumor for a week or more. So, we must wait. In the meantime, Nathan is resting and on pain medication to keep him comfortable for the next few days. When we visited tonight he was sleeping. He woke for a bit, long enough to request his SHREK dvd be played.

When I kissed him goodnight, I was struck by what a courageous boy he is. Not unlike so many of the other children whose stories I've read recently. Children plagued by childhood cancer, or other horrific diseases or challenges. How they just keep plugging away. Look into the face of a child and see your true self. Somewhere deep inside each one of us, that innocence exists.

Let us resurrect it. Treasure it. Share it. May the preciousness of a child live on and on and on. Bless Nathan. Bless them all...

Calling All Angels

Isn't he beautiful? My 2-1/2 year-old nephew, Nathan. He's as sweet as he looks, too. A happy, loving, adorable child. I must admit, I've got a serious crush on him.

Tomorrow this beautiful boy is undergoing surgery to remove a tumor in his abdomen. Based on an illness that began nearly a year ago, the doctors are pretty certain that this tumor is a Neuroblastoma. He began having neurological difficulties in January of last year. The symptoms were subtle, and not apparent at first. It wasn't until spring that they finally came up with a diagnosis of OMS (opsoclonus myoclonus syndrome, possibly with neuroblastoma). This is a very rare disease (maybe 700 cases per year), and primarily a pediatric, early childhood disease.

Nathan, his parents, brother, and close family have been on this roller-coaster ride since then. At the time of his diagnosis Nathan had regressed from a walking toddler saying some of his first words, to a toddler that could barely sit up on his own. He had tremors, emotional issues, and was having a difficult time eating solid foods any longer. The doctors at Children's Hospital of Milwaukee made the diagnosis and began aggressive treatment. He had scan after scan looking for the tumor that usually precedes this condition. They found none. This was a relief.

They began chemotherapy and imunoglobulin therapy. They put him on a year or more regimen of steroids that cost over $30,000 per month. He has monthly transfusions. But, his progress was amazing. By the time he left the hospital he was walking again. Regaining some strength. Within months, by the time of his 2nd birthday party in July, he was running. Miracle of miracles. Makes me cry just thinking about it.

He has speech therapy, physical therapy, he still takes steroid injections, he has a transfusion each month. He's been lucky, he hasn't had many of the side effects that come with the steroids he's getting. He's energetic. He loves The Wiggles. He can jump up and down to music endlessly. He loves Richard Simmons' "Sweatin to the Oldies" and knows the routines.

Earlier in the fall of 2008 he had a check-up with a series of tests which turned up clean. No sign of the cells that belong to a Neuroblastoma. Or so we thought. When he had his 6-month MRI, shortly before Christmas, they found a growth above one of his kidneys. This was an incredible blow, since he had recently had such a great medical review. My sister and her husband were knocked out shocked. It took time to catch their breath. The hope was that Nathan's body had already fought off the Neuroblastoma, and that was the reason for his illness. But this time, the OMS was a precursor to the tumor. Because of that, and the regular MRI's, etc., they were able to catch it early.

All signs seem to show that this tumor is exclusive. That it hasn't spread. But until the tumor is removed, and the pathology known, and prognosis and any further treatment determined, we'll have to wait. I pray that the surgery tomorrow goes smoothly. That they are able to remove it all. There is no spread of the tumor. That he will recover without regression. That he will not be in too much pain. That he will soon be a very healthy, cancer-free boy.

What I'm asking for, dear readers, is a Calling of Angels. Whether you believe in God or not, whether you belong to a church or not, that doesn't matter. This is a request for prayer, good karma, good wishes, from you, dear readers. From anyone reading this post. From anyone who wants to share this post. Please, take a moment, say a prayer, make a wish, just send a warm thought, a warm virtual hug to a small child, out through the cosmos and back again.

Life is a beautiful thing. I already know that Nathan's life is a loving one. I pray that it's also a very long one.

Thank you....Kimberly