Our Life With Cancer

September is Childhood Cancer Awareness month and in honor of that, I have decided to share a lot of moments I haven't shared before.  September is all about raising awareness for childhood cancer, but what if people don't fully get it?  What if they don't really understand what these kids go through?  How can anyone who hasn't experienced it really know if those who have experienced it don't tell them?  So I am going to try and censor less and share more of the everyday moments that really tell our story.  Cancer is such a personal thing and sometimes it is hard to throw it all out there for the world to see, but I'll try and do a better job of showing all of the moments that make up living with cancer and not just the "big" ones.  But I want to start by giving everyone the nutshell version of how things started out for Clayton...

After a crazy, crazy pregnancy, Clayton arrived November 5, 2008.

We knew from the time I was 14 weeks pregnant that there were problems.  After he was born we confirmed that he only had one kidney that functioned and it only functioned 1/3 of what it should have.  So on November 10, 2008, Clayton was life flighted from USACW to Children's of Alabama in Birmingham.

At 10 days old, they did a surgery to help repair his kidney in hopes of improving its function.  Everything went well with the surgery and then it was just wait and see.   His recovery seemed to be taking longer than we had been told, but still going OK until we walked into the NICU on December 3, 2008 and saw our child, whose entire body had become unimaginably swollen overnight.

Long story short, we worked out some "kinks" at the NICU there, he slowly began getting back to normal and then with the help of  AirMed and the wonderful Dr. Terry, from Mobile, we got to bring him back to USACW.  (Dr. Terry has been an important doctor to us ever since we first met him when Clayton was born.  I have the utmost respect for him and if anyone is ever in need of a urologist for their child, I highly recommend him.  He is a great man.)

He continued to slowly recover at USACW.

Then, after a combined two months in the NICU, we finally got to bring him home! 

We kept a feeding tube in for about two more months, and then the next couple of years went by with routine doctor visits and labs, but no real problems.  Our biggest worry became his scoliosis that started to develop around 6 months.

For the most part, everything was blissfully normal- though for some reason I didn't take many pictures in 2011.  The only thing we were trying to work out were issues with urine retention and so we had been seeing doctors for a couple of months before his diagnosis.  No one had answers, instead they felt things would be OK for now and we could do more testing when he got a little older.  But then one Saturday, 3:30 p.m. rolled around and he still had not urinated.  His stomach was enormous and he was clearly uncomfortable, so we took him to the EC at USACW.  FYI- EC is for Evaluation Center.  Apparently hospitals are getting too fancy for the term ER these days.

This is where it all began.  The following Tuesday, he was diagnosed with stage IV, high risk neuroblastoma.  It seems important though to show everyone who he was before cancer.  Because it shows that this could happen to any child.  I didn't smoke or drink during my pregnancy, this isn't something hereditary.  It was random and it randomly picked my child the same way as it could randomly pick anyone elses.  In Clayton's case, the underlying gene mutation that is likely responsible for the cancer is also responsible for his scoliosis and his kidney disease.  But still, it is all random.    There will be roughly 650 kids every year diagnosed with neuroblastoma in the US that need new treatment options.  Some of those children might have prior health issues like Clayton's, but most won't.  The majority of those diagnosed, will be completely healthy children like my sister's kids or my cousins' children, your children, your grandchildren, sisters, brothers, nieces, nephews; it could be any child you love.  This is a cause that needs people to understand that the best thing we can do is provide funding for the research so that the brilliant research doctors out there can develop new treatments and map out the road to a cure.  This cause needs funding now for the same reason we didn't wait until Clayton possibly relapsed to go to NYC.  It is better to be proactive, because otherwise it might be too late.  This is a cause that is sadly overlooked in comparison to adult cancers and so we have to raise awareness.  These kids can't speak for themselves, so we owe it to them to speak for them.  Maybe people knowing more about what having a child with cancer really entails, will help be that extra little push to help us make a difference.  Anyhow let me get off my soap box and share what cancer has been like for our family...

 

Cancer is an empty coke can sitting on a desk for 11 months because when we left for the ER on that Saturday afternoon November 19, 2011, we never thought that over the next few days, time would both stand still and surge forwards simultaneously. I would have never thought that for the better part of the next 11 months, I would not step foot in our "office" to use that desk again. And when I did go in there, it would only be to attempt to clean up the “state of emergency” that had become our life. Who would have thought that a coke can would represent a more peaceful time. A time when the worry wrinkle on my forehead might not have been going anywhere, but hadn’t yet turned into the canyon it seems to be today. Tonight I used my desk for the first time in 11 months and I almost threw away that can, but then I stopped.

Cancer is me standing in an elevator holding my breath trying not to touch anything and praying I don’t get anyone’s germs. It is learning what neutropenic means and knowing that I don't dare want to give my neutropenic child any germs. After a while the sensation to wear a haz-mat suit in public places eased a bit, but the addiction to hand sanitizer remains. What did people do before those nifty machines on the wall? I've become much more aware of dirty things…and dirty people.  Even our front door greeted the few visitors allowed with sanitizer, lysol and face masks.

 Cancer is learning that I can’t let it get to me every time I have to hold my screaming child down for something. It is par for the course. It is me telling George, “You get the legs and I’ll get the arms.” It is just something that has to be done and so we have to man up and do it. In the end I think we remind ourselves that at least it is us and not just strangers. Afterwards we just hold our sweet baby and say sorry...over and over and over again.

Cancer is being so use to the central line hanging from Clayton's chest, that we almost forget it isn't "normal".. It means no baths or swimming. It is getting use to weekly dressing changes and learning what tape works best for his skin. It is gloves and alcohol pads and routine saline and heparin flushes. It is nurses laughing at you when you ask them if having the tape over your son’s little nipple for a year will hurt it. Common sense people! He has sensitive skin that turns red at the mention of tape, so how tape for a year might affect a sensitive area like his little nipple seemed a normal question to ask. Apparently I was the only one who ever asked these nurses that. Then again they were like 12.

Cancer is waiting all day for a doctor to make rounds and tell you what is going on with your child. It is using every fiber of my being not to jump across a conference table and strangle that same doctor's sorry behind. It is getting annoyed when nurses act like your new at this "cancer thing" and getting irritated with the ones that think they know more than they do. If you don't know, say you don't know.
Cancer is 5 a.m. labs and then waiting to hear the results of Clayton's creatinine, hemoglobin and white blood cells. It is calculating his ANC to determine how paranoid we need to be about germs at any given time.
Cancer is going to the hospital and doing cultures for a temperature of just 99.5. It is constantly asking "is this normal" or "should I worry".
Cancer is bed pads and bed changes. There have been days when I have had to change the bedding five times. It is paging nurses for more linens and hoping they bring you what you need before you have to have it.
Cancer is deciding hospital cafeteria or something else. It is getting tired of eating out for every meal...every day...again...and again...and again It is longing for some good home cooking.
Cancer is spending 90% of your time in a beige box. It is sometimes sharing a bathroom with all of the other parents. Sometimes it is living in a room with another family all together. It is a complete lack of privacy.

Cancer is trying to fall asleep only to hear the gagging that is no doubt about to be followed by vomit. It is frantically trying to turn on the lights, hold Clayton up so he won’t choke and meanwhile tell George to go grab towels…faster, faster. It is seeing the distress in Clayton's eyes and trying to keep it together on the outside, but on the inside screaming, “Oh shit. What do I do, what do I do?” In all honesty, some nights I end up thinking out loud in the immediate chaos that follows the first bit of vomit. Yes, I say the first bit of vomit, because more usually follows. But don’t let me fool you, the vomit isn’t limited to just night. Just like the cancer, it will come out of no where. There have been times when there has been more vomit in ten minutes than I would have thought his little body could hold. Vomit of every color and consistency just became a part of life and after a little while we learned to react a little better.
Cancer is nosebleeds and going to the hospital for blood and platelets,

It is losing sweet little blonde curls,

It is a three year old trying to find room to play on a hospital floor while hooked to his IV pole,

It is one ambulance ride after another,

It is a little boy clawing his neck up from an itchy chemo rash,

Cancer is a mass of dirty diapers. I mean dirty. A lot of them. Sometimes they are like water and sometimes like mucus. Nine times out of ten they stink…bad. And if C. diff is involved expect that they will clear a room. I'm talking a road kill-like stench.
Cancer is waking up in a puddle of orange urine because my child’s bladder is irritated and one of the medicine’s to “calm” it stains everything orange. It is counting diapers and gauging how much input there is verses output. It is trying to stay awake (or wake up) to make sure Clayton is putting out enough urine after chemo in an effort to rid is body of the toxins. Technically it is the nurses job, but we quickly learned to pay attention to everything. EVERYTHING.
Cancer is opening a diaper and learning not to be shocked when greeted by lots of red. Did you know that there are different levels of bloody diapers/urine? There are. There are blood tinged diapers, there are small clots, there are large clots and then there are horror shows. Some children going through chemo will never have any of these, and others will experience all of them. I’m not sure what is says about me that I can see a bloody diaper to the extreme and not completely lose it knowing something very wrong is going on inside my child. (Be warned some of these pictures are hard to see, but this is what chemo can do)
It is uncovering him on the couch and finding this...

or waking up to this...

or getting surprised with this when you thought things were getting better...

it is seeing this and being speechless, (and the answer is yes, those clots all came from his bladder)

Cancer is doing a CT on Thursday morning and a MIBG injection at 2 p.m.  Then MIBG scan and x-rays on Friday. Oh and can't forget bone marrows. Then there are all of the x-rays and ultrasounds in between...and echoes.
Cancer is a countertop full of medicines. It is cutting pills and remembering to give medicines. There have been many phone calls to my mother when she watched Clayton while I was at work, telling her to give him the green one if he starts acting nauseas.
Cancer has meant seeing my sweet little boy in some of the most vulnerable conditions and not crumbling. It is accepting that things will get worse before they get better. It is learning to pray for the better.

Cancer is seeing my child’s sweet innocent little body covered in scars. Who knew that something so soft and sweet could have so many scars. Long scars from biopsies and tumor resections. Weird little bump-like and even crater-like scars from tubes. The scars seem to just keep coming.

Cancer is waking up early to try and shower before the doctors (at least those that are timely and professional) come and do their rounds. Then there were those mornings where I just didn’t care and greeted the doctors, bed–head and all.

Cancer is many, many nights sharing a hospital bed with Clayton. Many long, uncomfortable nights. I have longed for my own bed. I have reached the point where I no longer care about my bed, I would sleep on the floor if it meant I could sleep in my own house. Screw it, it is being so desperate, I would settle for sleeping on the floor at the Ronald McDonald House just to be anywhere other than the hospital.

It is being so tired from a poor night's sleep that on the drive from the hospital to work, you don't feel like looking for your own glasses, so you reach for the Lightning McQueen ones in the car seat.

Cancer is wishing we could bribe our child. What we wouldn't give to say sit still for this one test and we'll go to the toy store and you can get anything you want. It is learning the TV channels at multiple hospitals and Ronald McDonald houses so that we can quickly toggle between Nick and Disney. It is figuring out new ways to calm him when he is angry.

Cancer is coming home and finding that bugs are trying to invade our space because we are never there.
Cancer is a three year old who is afraid of doctors and weary of everyone and anything that comes near him.  It means that every time we walk into a hospital he gets tense.  He knows.  It means that Clayton fusses every time we change his shirt because he is afraid we are going to mess with his Hickman.  It means that he now cannot go to bed on his own.  Instead, he spends every night going to sleep when we do and sleeping in the middle of us because we had to put him there when he was hooked to IVs at night.  We couldn't have him waking up in the middle of the night and dragging his IV around.  It means he still sleeps in the middle of us because the two of us would rather see his beautiful face beside us every night than put him back in his own bed.
Cancer is trying to control my irritation with doctors and nurses when they aren’t timely with things.
Cancer puts a new emphasis on time and I have found myself more OCD (I use this term loosely) than ever about the idea of efficieny. Remember the traveling salesman problem? Maybe that was just me; Finite Mathematics at Auburn University…one of my favorite classes ever. Anyhow, irritation with inefficient doctors and nurses have left me craving efficiency. If it involves me, I like it to also involve being efficient. Got to love the clinic at MSKCC. They are pretty good about that.
Cancer is trying to decide Wellbutrin or Klonopin? Honest is honest and sometimes hard times call for medication. I got a prescription for Klonopins a couple of months into everything that I would use as needed, but when your away from home for so long, you wonder if you need something more. I tried something else for a couple of months, but in the end it just messed with my hormones and emotions even more, so just Klonopins for me please. Just to reassure everyone I don't have a "problem", I have never even had my prescription refilled. (George would probably say I should take them more than I do.)
Cancer is my hormonoes going so crazy that my hair has grown unbelievably fast these past months.  The only time it has ever grown that fast is right after I had Clayton when all of my hormones had one last surge before recoverying from being pregnant. That just shows what the emotions of all of this can do to your body.
Cancer is living every day carrying the weight of the idea that in a few months or a couple of years my child might die. That's the thing I am not suppose to say huh? That is the question that lingers in my mind everyday. Everyday I see how beautiful my child is and everyday I wonder if he will be taken from me. Will I have to watch my child die? That is our reality and no matter how optimistic we may be, that question is never far from our minds. We hope and pray that Clayton will be fine, but we know what this horrid disease does and so we wonder. We wonder what it has in store for us. Our entire lives are at the mercy of this beast. Things are literally day to day.  It would be impossible to explain what it is like to wake up every morning with all of these feelings, all of these fears. We and every other parent in our shoes just has to find a way to transition back and forth between our reality with cancer and our everyday life. 
Cancer is survivor's guilt. There is no reason on earth why I should have it, but I do. I am so thankful for how well Clayton is doing, but I feel awful for those families that aren't doing as well or who have lost their children. I want to scoop those kids up and squeeze them and I want to just hug their parents. Maybe more for me then for them. Maybe they can give me some of their strength to keep living this way.
Cancer is wishing desperately that I could fix things. That I could fix screwed up hospitals, governmental policies and insurance policies. It is wishing that I could fix Clayton and Matthew and Stergios. It is wishing that I could do something to make sure that Zoey, Abigail and Lily don't relapse and if they do that there is a cure waiting for them. It is having to live every day feeling powerless...sometimes even helpless.
Cancer is trying to hold on to who I am while rolling with the punches. That is exactly what they are, punches; one devastating blow after another. It is learning when to control my temper or just get pissed off. It is trying to choke back tears...often. It is trying to be who I am, without the stress of this catastrophic event that seems to sometimes bring out the worst. It is reminding myself that the frantic lady I see in the mirror sometimes isn’t me, it is cancer. I am doing what is necessary for my family to survive this crap. It is trying to keep all of the emotions in check so that I can get out of bed and do whatever I have to do each day whether that is facing doctors, family, friends or coworkers. Having a child with cancer is seeing how far you can bend until you break. It is seeing how deeply you can love. It is seeing what you are willing to do to make a difference. It is seeing how devoted you can be to a cause bigger than yourself.