As a follow up to last night’s post, tonight’s is about the single best thing to come out of Childhood Cancer coming to our house, Camp Smile a Mile. After we enjoyed the day at the circus, one of the many fun outings they provide for families, we became curious about camp. So, we decided to go to Family Camp weekend and see what it was all about. It has provided us with some of the dearest friends of our lives, that we would have never known otherwise: and it remains, the brightest star in the dark sky of Childhood Cancer.

May 17, 2009-CBJ

Respite (res’pit) n.-A short interval of rest or relief

Can an empty bottle of Spray n’ Wash be an indicator of happiness? It can at this house where many of the clothes that came back from Camp Smile a Mile, were utterly ruined. After many sprayings and washings, many formerly “good” shirts have been relegated to that graveyard of the clothing world, the play clothes drawer.

How do I try to sum up Camp SAM? The boys were nervous about going, but as soon as they saw the pool, the lake, the volleyball and basketball courts, the boats, they exploded out of my van in three different directions and were rarely seen again. They each had their own counselor whose only job was to help them do whatever they wanted for the weekend. At Camp Sam no one looks twice at a kid with a bald head or an accessed port. You aren’t “that kid with cancer”, or “that kid whose brother has cancer”; just a kid for a while.

They take your child’s medicine from you when you get there. They have a medical staff and they do everything. Several of our 4 Tower nurses were volunteering their time there. They handled it all. They just let us be Moms and Dads for a while.

The kids stay busy from dawn (really) to dark and they don’t have time for you anyway, so you have time to just be. I enjoyed meeting the other parents. We did talk “shop” some, but about other things too. We had massages on a screened-in porch while listening to the rain and the distant sound of our children playing. We read, painted, took boat rides, napped, or just did nothing for the first time in months.

It was so relaxing and joyful that you could almost forget why you were there. Almost. On Saturday, a group of us were sitting around talking, and I happened to glance over at a man I met whose daughter is just starting Consolidation. He was looking at her with an expression of such naked sorrow that I was ashamed to see it, so utterly was he exposed before me. It was then I remembered the terrible price we pay for this free camp. It can only make it go away for a little while, but sometimes a little while is enough to get you through.

My most special memory of camp was on Sunday morning. I got up a little bit early and walked over to the “Happy Camper Garden”. It is a lovely spot on a point, overlooking the lake. It is a garden and in it, granite markers with the names of the “happy campers” who came to camp, but have now gone where children go when they don’t have to suffer anymore. There are markers from the 1990’s up to 2008, and spaces for where more names will inevitably go. When I come back next year, there will be names on there that I will know. I will instantly be able to call up a sweet face to go with them.

There is a swing there, bearing a small plaque saying that it was dedicated in memory of someone who was “a friend to Camp SAM”, someone who has helped me and my family in some way I suppose. I sat down for a while and just enjoyed the morning, foggy and overcast as it was. A V-formation of geese passed overhead, though whether coming or going, I cannot say. Instead of feeling sad for the kids that are gone, I felt glad that they had had some fun days in the sun, in this beautiful place. They had done all the same fun things my children got to do and got to forget about it all for awhile. I felt in some odd way that we are all connected, all part of some great whole, that the echoes of their lives are still present here. It was a comfort somehow.

If you are interested in knowing more about Camp Smile-A-Mile, Alabama’s only camp for kids with cancer, visit:

Home

Okay mea culpa, it is no longer September, no longer Childhood Cancer Awareness Month, but I have three more posts. I could give you some heart felt sentiment that I purposefully went over into October to illustrate that cancer is never over for those of us affected. That is one truth, but my truth is better. My Survivor, now aged fifteen, and six feet tall, is playing football two nights a week, plus practices. Truthfully, I just got run over by September in the best possible way.

A couple of weeks ago, my husband took Jack to a University of Alabama football game. They stopped by the tailgate tent of our friends at A Team Ministries. Andy and Jan Thrower walked a mile in our shoes with their son, Anderson, who like Jack, is through with treatment and doing well. They used the lessons of their tragedy to start A-Team Ministries, a non profit organization that supports families going through cancer. I will include the link at the end of the post. 

 As the adults caught Up Jack noticed a young boy, Sam, sitting alone, a little disengaged from the action. He had the tell-tale bald head, and was sitting in a wheelchair. He went up and introduced himself, and began to share his story with Sam. Before long they were comparing scars. Jack showed him where his port had been, Sam showed him the scar on his head from surgery. They talked drugs, hospitalizations and all of it. My husband said he watched Sam come to life as he talked to someone who really understood. And as Jamie talked with Sam’s parents and encouraged them, their eyes never left Jack, devouring the sight of a healthy Survivor. He said:

“You could tell they needed to see him. It was a total God thing.”

As he related it to me that night, it reminded of the time God did the same thing for me.

January 29, 2009-CBJ

“Great is they faithfulness, great is thy faithfulness, morning by morning new mercies I see.

All I have needed thy hand hath provided, great is thy faithfulness LORD unto me.”-Thomas Chisholm

I have a wonderful story to relate tonight. I always MEAN to take my kids to the Circus every year;  but  it comes right after Christmas, when you’re broke and tired, so I just never have. Poor deprived darlings right?

So, while I was at Children’s Hospital one day, I see a sign saying Camp Smile A Mile has circus tickets for cancer patients and their families. I called and talked to a nice young lady, Jennifer, who said she’d be happy to send enough for all 5 of us to go this Saturday. Great!

When the tickets still had not arrived by Monday, I emailed her to let her know. She replied that she had sent them over a week ago and verified my address, which was correct. No telling what had happened to them, and alas, no more tickets were available.

As this ain’t my first rodeo, I had not the Circus to the kids so they would not be disappointed in case something (usually a trip to the hospital) happened. So, no harm no foul, story over right?

Yesterday, I got a call from Jennifer at Camp SAM. She says:

“Boy, this must be your lucky day! I’ve just had a call from a Mom, who will not be able to use their (wait for it) FIVE Circus tickets after all.”

She then gave me the lady’s number so I could call and arrange to get the tickets. As I was punching in the number I had a sudden, overwhelming thought:

“You didn’t get those tickets because you are supposed to meet this person.”

I called her and she was very nice. We made arrangements about the tickets. Then she asked about my sick child. I told her about Jackson, and asked about hers. Her daughter Sarah Anne, had leukemia when she was two. She is eleven now, and finished all her treatment six years ago. She goes to school, she makes straight “A’s”, plays basketball, and is a “normal” kid in every way. They went on to have two more children and went on with their lives.

When I met Kelly today to get the tickets, she had all the kids with her. I could hardly take my eyes off Sarah Anne. She sat there, blonde, with big blue eyes and ear-buds in her ears listening to her ipod, bored while her Mom and I talked until the cold got to us. Being every minute of eleven years old. It was a beautiful sight.

When I looked at her I could see a day when this will all be over, and it will seem like a long time ago. I didn’t even know I needed that today, but God did. How can I not trust a God that even takes care of needs I don’t even know I have? And I got Circus tickets.

Mary

 

P.S. I am happy to report that Sarah Anne is still doing well, and is a sophomore in college. And the original tickets? They came  in the mail the next week. God’s perfect timing.

If you would like to know more about the wonderful work being done by the A Team, go to:

http://www.ateamministries.org

This photo is the first one of our family “after”. Our brave smiles break my heart, but the strength that would carry us through is there also. It will be 9 years ago tomorrow.The truth is, eventually you can learn to live with anything…because you have to. In the world of cancer things move along at a breakneck pace immediately after diagnosis. It can’t wait until you get your mind around it, and there is not much time to mourn your life, which has just imploded. There are tests to be done, procedures to be endured, medicine to be swallowed or injected, arrangements to be made, and in our case other children to be considered. And always, always, the silent specter of cancer in the corner of every room you go in.

In Childhood Leukemia, the first phase of chemo is called Induction, and lasts 29 days. At the end of it the bone marrow is sampled to see if the chemo has “induced” a remission of the cancer. Everything hinges on that, and no future can be envisioned without that information. Each week brings different medicines and treatments. I learned to only plan a week ahead, and it ended up being a pretty good way to not lose my mind. Jackson didn’t want to think about the clinic when he wasn’t there, so we began to wait until Sunday evening to talk about what would happen that week. It ended up being a pretty good way for him to cope too. The rest of this post is from our Caring Bridge Journal entries about this time.

 

 

October 11, 2008-Caring Bridge Journal

“Yes, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me…”-Psalm 23:4

Good morning everyone,

I hope you enjoyed the nice weekend. The big boys went to church with Jamie and jack and I went to the park for a little while, but he got tired and we had to come home.

We celebrated jack’s last dose of Prednisone by grilling hamburgers tonight. He will not be allowed to eat in the morning. He is already worried about that.

Tomorrow we head to Birmingham for a lumbar puncture and a bone marrow biopsy. These will be tested for the presence of leukemia cells, and see if the chemo has put him into remission. The doctors will look at it there and will be able to tell us something, although it will go to another lab for the final report. The possibilities are: complete remission, partial remission and no response. Because his day 8 bone marrow was completely clear, making him a “rapid, early responder”, it bodes well for remission. These results will determine the rest of his course.

I think Jamie and I have both been feeling anxious these past few days. I have had trouble sleeping and have felt a little out of it. Even when you know God has you in the palm of His hand it is hard. It is an odd thing to walk into a room with a doctor and know that whatever he says will direct the course of your life. Oh the power a sentence can have.

I have spoken with all the boys and they know what is ahead tomorrow. I think they are doing well with it. I am so proud of them.

I prayed for all of you today. You cannot know what it means to have your love and support. I hope you never have to.

God bless you!

Mary

 

October 13, 2008-Caring Bridge Journal

From your lips to God’s ears:

 

IN REMISSION!!

More later, we are headed home!

 

 

October 14, 2008-Caring Bridge

“Our God is an awesome God, He reigns from Heaven above.

With wisdom, power and love, our God is an awesome God.”

-Rich Mullins

Good morning everyone,

 

I hope you will forgive us for not posting an update last night. We both agreed we were EXHAUSTED. The tension of the day caught up with us and we could barely move. Think deflated balloons.

Thank you so much for your wonderful posts and the way you shared our joy. Obviously, it is the best news we could hope for. Jack feels great and his immune system is in good shape and will stay that way until we go back on Monday. We are hoping to ALL come to church on Sunday, and Jack is definitely hoping to come to Fall Festival at church on Sunday night.

Now, what comes next? Remission is not cured. It means we have induced a remission of the leukemia, hence the name “Induction chemotherapy”. Research has shown that most kids would not stay in remission without further treatment, the leukemia could come back or “relapse”. Jack is at more risk for this because he has T-cell ALL as opposed to Pre B-cell ALL, and because his WBC count was so high at diagnosis. He is considered “Intermediate Risk” but not “High Risk” so he will not have to have as much chemo as those kids.

So, starting Monday we will move into a new phase of treatment called Consolidation. It will involve some of the drugs he has been on and some new ones. It will be a two-month cycle. He may feel pretty bad and hi immune system will be even lower than it was before.

After Consolidation, he will move into Interim Maintenance, then Delayed Intensification and finally Maintenance which will last the remainder of his 3 ½ years of treatment. At some points during these treatments he will be able to do normal kid things. We are told that he should be able to go back to school before the end of the year.

So, now you have completed Childhood Leukemia 101. There will NOT be a test! If you feel confused, you are not alone. I had to consult my notes several times while writing this. I am trying to process our new road too, but like everything else so far, if I just focus on what’s right in front of me, and stay in today, I do fine.

We are still eating elephant…one bite at a time.

As I wrap this up I want to share with you something else that happened today. After our sweet doctor gave us our good news, he went across the infusion room to give another family theirs. I could not hear the words, and didn’t try to, but I could see that their news wasn’t as good as ours. My heart just bled for them. All around us are children in worse situations than ours. We are so thankful, but just so you know, God is still God no matter what he had come and told us. I turned it over to Him that day in Dr Phillips office and have not felt the need to take it back.

I hope you have a great day, and if you need me look on the ceiling!

In the time now known as “before”, September meant returning to school, and football and a break from the heat. Then came September 11, 2001 and it meant something else as well. But, September 11, 2008 became the great line of demarcation down our lives, by which all events are now placed in time. “Before” or “After”. September is Childhood Cancer Awareness month, and all the posts this month will be about our journey, most drawn from our Caring Bridge Journal  which I have turned into a memoir of that time. My deepest hope is that you will read only as a spectator into the terrible, heart breaking, yet inspiring and joyful world that is Childhood Cancer. Spoiler alert: this story has a happy ending!

 

“This is the way the world ends.”-T.S. Elliot

I never saw it coming. Veteran nurse of 15 years, oncology nurse for 11, I never saw it coming. The blow when it came, was a sucker punch, a bolt of lightning from a clear blue sky. Once I knew all the pieces clicked into place, and then I wondered how I could not have known.

Jack came down the stairs that morning to find me at the dining room table, having my quiet time before the day began. My Bible was in front of me but I cannot for the life of me remember what I was reading. Did it help sustain me through the day that was to come? I hugged him and I could feel that he was hot. I took his temperature and it was 101. He still had that cough that I had been attributing to allergies, although in retrospect, it had a strange barking quality to it. I called into my job at the Cancer Center and arranged to take him to the doctor. I predicted a diagnosis of Bronchitis, a quick prescription and a day on the couch letting him beat me at Battleship. If only it had been that simple.

As we walked into the Pediatrician’s office in the bright sunshine, I noticed for the first time that he was very pale. As I helped him undress I noticed all the bruises on his legs, and always that cough, that strange cough. Maybe you do not see what you do not want to see, or maybe you are busy living your life and do not see the pattern in the random details.

After an exam, our Pediatrician, Dr. Phillips, did a chest X ray and drew a complete blood count, or CBC, which looks at all the different types of blood cells. Then he sent us to the hospital to have both tests redone. I began to have a sense of dread that mounted with every passing moment.  While we were still there his nurse called and told us to come back to the office.

Funny, how you can know, and yet not know. How you tell yourself that there is nothing wrong, that it could be something else, anything else, even an old oncology nurse who should know better. But, when we got back to the office and the nurse came to take Jack out to the desk to color, there is no denial that can survive that. Then you know.

As I waited for the doctor I knew I had about 30 seconds to decide how to live the rest of my life. I prayed:

“Father, whatever is coming, it’s too big for me. I put it in Your hands, and I will do my best to walk through if You’ll go with me.”

Then Dr. Phillips came in to tell me what I really already knew.

He said: “His white blood cell count is 100,000 and there is a mass in his chest.”

I said: “Is it leukemia?”

He said: “I think so. You have to go to Children’s Hospital tonight.”

And just like that, the life we knew was over.

 

“And now for something completely different.”-Monty Python’s Flying Circus

I’ve been a member of some gym or other all of my adult life, membership being one thing, attendance being another. At the moment I am pretty faithful, and have observed in my current gym, as in others, some universal types one runs across. They include but are not limited to the following.

Super Sweaty Guy:

I am over here on this treadmill killing it, but you? Well you are taking it to that next level. You make me look like I’m just not trying and have LITERALLY made a puddle under you on that Elliptical. A puddle folks. I would seriously love to see an infrared map of your sweat glands, I bet you have double the normal amount. The nurse in me wants to start I.V. fluids on you, the human in me just threw up in my mouth a little. And now you’re done, and you moving on, just leaving it there, like your Mother will be coming along any minute now to clean it up for you. Seriously dude, I have two words for you, or maybe it’s just one, I don’t know? Sweat Band. Move getting one to the top of your priority list. Maybe two.

Conditionally Helpful Guy:

He make rounds of the gym,  happy to interrupt his workout to provide form tips and suggestions, but only to those who fall within a narrow category, i.e. young, cute and female. That older lady who can’t figure out how to turn on the treadmill? He moves right past her. That old dude who is about to decapitate himself with the chest press bar? Well, he’s on his own. But to the young and cute he’s all yours. He is steadfast even though he has to  overcome obstacles such as earbuds and lack of eye contact, but he perseveres. Being as this is the south, he is usually met with tight, forced smiles, polite attention and then attempts to flee. Occasionally he encounters the filter-challenged who, shall we say, offer alternate suggestions of what can be done with his advice. Fortunately for him, his super powers include unsolicited advice and  being impervious to social cues.

Weight Machine Succubus:

Hey buddy? You see me over here standing a polite distance from that machine you’ve been holding hostage for, oh, 10 minutes now? Yeah, I’m talking to you. Another 5 minutes and I will quit hovering and begin my campaign of laser death stares to get you moving. Perhaps you are unaware that weight machines are for EXERCISE purposes only. Additional uses do NOT include:

a. Meditation areas, for staring into space and thinking really deep thoughts, and being sure that you are being observed doing so.

b. Facebook/Twitter/Instagram/Snapchat updating/Selfie taking kiosks.

c. Appearance monitoring stations, for flexing and sneaking sidelong glances into the mirrors to be sure you’re still fine.

Keep it moving buddy, we have limited lifespans.

Cleavage Woman:

You are absolutely fit, of that there can be no doubt, and you want us to know it. You are a miracle of spandex, strategically place straps and insecurity. Still, as you go about your workout I live in fear that you are about to blow and rain down breasts on Planet Fitness. I don’t even hit for that team and I can’t quit looking at them, so I know there’s not a guy in this room that could tell me what rep he’s on. You are leaving here with a husband or a respiratory infection, whichever comes first. And as you go in for the dead lift, I hold my breath and pray for “the girls” to stay put, while all around me, men fervently counter pray.

“I’d love to change the world, but I don’t know what to do.”-Ten Years After

Of all the terrible images from Charlottesville, Virginia this weekend, this is the one that bothered me most. I look at the young, handsome faces, contorted with rage, lips forever captured spewing hate, and try to see in them the little boys they must have been. As the Mother of sons, I can almost always see in men’s faces the ghost of the boys they were, and I start to see it now. I picture gap toothed smiles, and cowlicks and the peculiar beauty that little boys have. And I wonder how they ever came to this dreadful place, and if their Mothers grieve for the boys they were? Are they proud? Are they crushed? Did they build them into this, brick by brick, or watch helplessly as the tide swept them away. And as I did,  I remembered another Mother’s son from long ago.

James was a boy in my son’s Kindergarten class. On the day of meet and greet we had been asked to bring a picture of our child for the “Getting to Know You Wall”. I stood and looked at picture after picture of smiling faces, obviously taken with love and pride. And then I came to the picture of James. Rather, it was a picture of someone else and James just happened to be in it, in the corner, almost out of the picture. It was all he could find to bring. Something about it troubled my spirit and I began to notice James. He was a beautiful child, with a sweet smile. But he was usually unkempt, his hair always a mess. Not little boy messy, uncared for messy. He was frequently late, and always dropped off, never walked in. The first time I visited the class I noticed that his pants were on backwards. It would be comical except for the fact that he made it all the way to school without anyone even noticing.

Another time, on a field trip to the zoo, I bent to tie his shoe and realized that his shoes were too small. As in two sizes too small. That was the reason he walked so slow and fell behind. The teacher confided to me that he hadn’t brought the money for the field trip, so she paid for him to go. She just couldn’t let him be the only one who didn’t get to go. The next day I sent a pair of new shoes with my son, and from then on when I sent money for my child’s trips and parties I sent it for James too. He was shy and quiet, but affectionate. He responded to attention and kind words like a flower opening up. I never saw any sign that he was physically abused, but every sign that he was neglected. He lived his life present but unnoticed, unimportant, invisible, a spectator in the lives of others. And surely the certain knowledge that you don’t matter feels like blows.  James left our school after the next year and I have never heard another word about him.  I still pray for him every time I think of him, and wonder what became of him.

I wonder if the first time he felt loved and accepted, it was by a gang.

I wonder if the first time the pain stopped it was because of a drug or a drink.

I wonder if the first adult that took notice of him, that he could look up to, indoctrinated him with some ideology of Us vs. Them, and provided an outlet for the rage built up over a lifetime. Showed him how to feed the bad wolf. Used his wounds for their own agenda.

He would have been ripe for all of it.

Oh, I hope I am wrong. I hope instead that he met angels dressed in skin along the way. I hope God sent him people to encourage him, to love him, to lead him. To show him how to feed the good wolf. All these many years I have prayed these things for him every time I think of him.

But if that didn’t happen, I can see how the harshness and indifference of his life could turn that sweet smile into a mask of rage…and underneath rage, pain. How he might find himself in a crowd with a torch, hating people he doesn’t even know. I hope I’m wrong.

The point is, no one is born full of hate, they have to be taught. I can’t do a single thing about Charlottesville, Virginia except go on the record saying it’s wrong, and that they don’t speak for me. And pray. And I can look around me and see what is within my power to affect. What are the needs  in my circle of influence? What is my Divine assignment? I can armor up and head out into the mission field of my life. I can grow where I am planted until the day that God calls me home.

I know one day all things will be made right, and we will understand all that is beyond us now. I cling to that hope. But until then, I will be on lookout  for my next James.

(This post originally appeared as  a Facebook post on 7/8/16 in response to a dreadful week in America. In a three day stretch between 7/5/16-7/7/16, Alton Sterling, a black man, was shot and killed by two white police officers in Baton Rouge, La. ,Philando Castile, a black man, was shot four times in his car by a white police officer during a traffic stop. The incident was recorded and live streamed by his girlfriend who was also in the car, and in Dallas, Tx. Micah Johnson shot and killed five police officers during what had been a peaceful protest of the above events. In miserable irony, the day after this was posted the events of this weekend in Charlottesville, Va. Began.)

  It’s been a tough week for America. I saw a lot of sad things in the ether today. But, the worst for me were posts on Facebook from girls, young women really, in my son’s friend group, expressing their wrenching sadness, confusion and anger under “feeling hopeless”.

  They are smart, funny, curious, joyful young women, passionate about social justice and about life. I’ve known them all their lives. I’ve enjoyed watching them navigate the world alongside my sons. I can’t wait to see what they are going to be. The thought that these bright and beautiful people feel hopeless about our world at seventeen made me saddest of all. It stayed with me the rest of the day, and I have something to say.

To the Hopeless Girls:

This is hard , but I need you to do me a favor. I need you to have hope. I need you not to give up on this old world. If it is ever going to change it’ll be because of people like you, people who care, who love, people who notice and speak up when things are unfair.

  I need you to gather all your strength and not become cynical or hard, to have a heart that can take being broken again and again. I need you to get back up and keep marching time and time again. I need you to use all your passion and all your gifts to pour love into this world, and to never, never, never give up on people. They can be so ugly sometimes, but it’s usually because they’re broken in some way. Someone taught them how to hate, you can show them how to love, or at least what it looks like. 

It’s the darkest rooms that need a flashlight. Your light is stronger than the dark. Never forget that.

I know it’s a lot that I, that we are asking of you, of my sons, of your generation…but we’re counting on you.

“Everyone thinks forgiveness is a lovely idea until he has something to forgive.”-C.S. Lewis

Some Thoughts on Forgiveness:
One Sunday, I sat in my Freedom small group and listened as we discussed the chapter on Forgiveness. The sharing was brave and searing; of abandonment, of devastating acts done to the defenseless, of backs laid open by the lash of cruel words. As we shared, an image began to form in my mind from long ago. When my sons were small, every year their elementary school would have a “Spring Fling”. We would weave through a gauntlet of booths designed to take your money and give you schlock; a ring toss to win a 2 liter drink, a cake walk, a dart game to win a goldfish in a bowl.
Inevitably, as the night wore on, it would start. They would run up to me, their hair plastered to their foreheads with sweat, flushed cheeks, candy stained mouths, and say:
“Here Mama, hold this!” “Here Mama, hold that!”
And by the end of the night I would be laden with all of their junk. I’d roll my eyes, and do a little tongue-in-cheek grumbling, but really I didn’t mind. I loved to watch them free their hands and run off to play, carefree and laughing.
And that’s when it came to me, that we could do that too. We could just decide that we didn’t want to carry it anymore. We could just choose to give our hurts to God to hold.
“Here Daddy, hold this!” “Here Daddy, hold that!”
It doesn’t mean that its right what they did, that its right what they said, but we could just let Him hold it for us, so we could move on. We could just let Him decide what to do with it, that stale pound cake, that flat 2 liter drink, that goldfish that will be dead in the morning.
And He won’t even really mind holding those things for us, those things that are binding our hands and weighing us down. Because like any good parent He enjoys watching His children enjoy their lives. And then our hands would be free…and we could just go out and play.