“On the Other Side of Fear is Freedom”

As usual, before I dive in, I need to credit the title.  This quote is by Jenny Lawson, from her book “Furiously Happy”.

Earlier this year, a friend suggested I take Ryan to Camp Sunshine, which is a camp in Maine for children with life threatening illnesses.  It kind of sounded like fun, but Casco, Maine is over 1800 miles from home, and the thought of making that journey with Ryan was daunting, if not downright terrifying.  I would be going alone, and he is a runner, and I just could not see it happening.  Well, my friends encouraged me, hassled me, and basically browbeat me into sending in the application.  We were accepted, and all of a sudden I was filling out forms, faxing stuff and sorting through the travel arrangements Camp Sunshine had made for us.  As I waded through, I continued to worry, bugging people with questions, fussing about how afraid I was.  Well.  The morning,  (the very early morning…dark o’clock, to be exact), of July 17 got here, and Ryan and I found ourselves en route all the way across the country to Sebago Lake in Casco, Maine.  Ryan had the best time on the flight, absolutely loved the take-offs and landings (me, not so much…I whimpered audibly when the plane landed in Austin).  Once the flight was behind us and we were tucked in to our room, I took the time to be proud of myself for overcoming my fear of flying alone with Ryan.  All of the hoopla and drama was for nothing, we had made it and it was totally easy.

We got up Monday and headed for breakfast.  Well.  Not exactly.  BEFORE that happened, I had woken up to find Ryan gone.  Gone outside, out of the suite.  Woods right outside our door, a street, a lake, a pond…and not a single person outside.  As I started to search, he came up a small hill, so I didn’t really have time to freak.  I spoke to the front desk, and by lunch time they had found a way to Ryan-proof the room.  As well, he was assigned a 1:1 volunteer (Jessi), and Shannen, who was yet a second set of eyes, and the counselors, etc, had been alerted.  So we ate breakfast, and then I signed Ryan in to his day camp.  It was at this point that I would come face to face with my second fear of the trip.  I did not see it coming, and once I realized it, I couldn’t escape.  We had games.  Ice breaker, getting to know you kinds of games.  One involved getting in a circle and holding hands, and we had to pass a hula hoop around the circle without letting go.  All of a sudden I was in a circle with a stranger holding each of my hands, and I couldn’t let go.  I ended up just telling myself that I had just flown across the country with Ryan, I could DO this.  The next game involved putting masking tape on everybody’s nose and one person had to go around, basically bopping you on the nose, to collect all the masking tape.  Yeah.  A stranger was bopping my nose with hers.  And I didn’t melt, or whatever I thought might happen.  The other games didn’t involve touching anyone, but I felt empowered, and a day or 2 later, when I trailed behind a group on the Challenge Course, the very last activity of the day involved getting in a circle and everyone grabbed someone’s right hand with their right and someone’s left with their left, and then we had to untangle ourselves.  I joined this activity voluntarily.  Kinda gave up close and personal new meaning, but I was so thrilled with myself. So excited at having been able to participate.  On Wednesday, I decided to take Ryan out in a paddle boat. I was afraid of the kayaks, and just felt like the paddle boats would be a better option.  Ha.  I paddled by myself. His weight and mine, and not only did he not paddle, every time the pedals came towards him, he put out his foot to stop the motion.  By the time we got back, my knees were useless.  I tried to get out of the boat, lost my balance, and ended up crawling on to the dock, while the volunteer hauled Captain America (he wore his Captain America hoodie about 75% of the trip) out of the boat.  But Thursday afternoon I returned to the waterfront, determined to take on the kayak.  I had decided, somewhere along the way, that I did not want to go home and later think “Damn, I wish I had…..”.  Mostly I wanted to take that kayak out.  So I put on a life jacket (inside out…how the hell was I supposed to know?  We don’t wear life jackets daily here in the desert, and I don’t travel much), and approached the kayak.  The volunteer got ready to help me in, I put one foot in the blasted thing and down I went.  Banged up my knee good, but got in and settled, and rowed out on to the lake.  I spent an hour on the water, rowing, just floating, just enjoying the peace and quiet.  I love the water, love what it represents.  Finally I took it back in, managed to get out without falling on my face, and went back to the room.  I was so pleased with myself.  I had overcome so many obstacles, so many fears.  It is a great feeling when you realize you have conquered your fears! I conquered most of them, anyway…there were 2 Daddy Long Legs spiders on a tree on the challenge course that sent me running the other way, but that doesn’t count.

Along with all the activities, there were parent support group times.  I got to 3 of the 4 of them, and it was one of the most powerful experiences I have ever had.  I have Jenise here, and we do an awesome job holding each other up.  Online I have Brenda, Marie, Jen, Ann, Alicia, Leah, Laura, Beth, Jessica, and we also hold each other up.  But there is something about a roomful of parents all fighting for their child’s life.  We laughed.  We cried. We talked about the things that set us off.  About our triggers. About how we cope.  About our fears.  About how our other children are handling this.  We said things that someone else needed to hear, lifted each other up.  We talked about how our lives were derailed.  We talked about accepting help, and how so very hard that is.  And how very necessary it is. We talked about doctors who couldn’t figure things out,  and about the doctors that will hold our hearts and gratitude forever.  We described ourselves in terms of how we handle our child’s illness.  Boxes and boxes of Kleenex were passed around.  As we told our stories, either we cried or we touched someone’s heart and they cried.  A memory was triggered.  Almost everyone openly wept when they discussed diagnosis.  That still triggers me, and it was 8 years ago.  It never goes away.

There was a wealth of knowledge in that room.  We know more medical stuff than we ever wanted to know.  Some people were medical parents even before they were cancer parents.  There were 3 families, including us, with kids with Down Syndrome.  I connected with them, and we will stay in touch.

I came home renewed, revitalized.  Less afraid.  More empowered.  Ready to pick up the sword and battle on.  Camp Sunshine IS a magical place.  I am so glad we went.  I am changed, for the better.  I am part of a community now, a community that gets it.  It sucks that any of us have to be in this club, but  since we are, I am grateful beyond words to have been a part of this past week, and I look forward to returning, without fear.

I am going to attempt to insert the pic of me in the kayak.  I may be braver, but not much smarter.

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Look!  It’s me!!!  What a spectacular week.

 

 

 

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It’s a Dex Week

No catchy title this week.  Unless I think of one while I write.  I mentioned on my Facebook page a few days ago that my next entry would be about the evils of Dexamethasone, but that I would have to wait because we are currently experiencing the evils of Dexamthasone.

So what is Dexamethasone, and why is it such a problem?  Dexamethasone is a Corticosteroid commonly used as part of Leukemia protocols.  It destroys white blood cells, and it increases the effectiveness of other chemotherapy agents. Unfortunately, Dexamethasone interferes with the absorption of Potassium.  Several things happen when Potassium is depleted in your body:  Serotonin is not processed effectively, cramping and general body aches may occur, and your immune system is further compromised.  Appetite changes and food jags often accompany Dex pulses.

So what does this look like?  Once a month, Ryan takes 3 mg of Dex each morning and each evening for 5 days.  Ryan clears medication at a slower than normal rate, which, while the oncologists may disagree, is evidenced by the fact that his ANC remains elevated as long as a week  to 10 days after his first dose, and some times longer than that.  This shows that the medication is still being metabolized, rather than clearing quickly, so the side effects are often extended.

We call the side effects ‘roid rage.  Children on Dexamethadone can experience anything from mild irritability to steroid induced psychosis.  They may eat everything in sight, or they may eat nothing.  Food in general may sound good, or they may go on a food jag.  They may be completely revved, going 100 miles an hour, or they may sleep 18 hours a day.  Ryan has done it all.

I can recall one Dex pulse that occurred inpatient.  Ryan went through this phase where EVERYTHING sounded good, but once it was in front of him, he didn’t want it, and I had to go make or buy the next request.  The object of the game was for me to procure the desired food before he decided he didn’t want it after all.  One day, it started at breakfast.  He wanted a burrito. That was NOT what was on his breakfast tray.  So the nurse ordered it. By the time it got there, he wanted eggs and bacon.  I ran down to the cafeteria to get that.  He ate a few bites, then said he was not hungry.  About half an hour later, he wanted chicken rice, which I make at home before inpatient stays because it’s a staple.  Ran to the kitchen, fixed a small bowl of that.  2 bites and “I can’t do it.  I not hungry”.  20 minutes later it was pizza.  We always keep pizza up there.  Off I went.  Nope.  Not gonna eat that.  Wants a cheeseburger and fries.  It’s nearly lunchtime, so the nurse orders that.  It got there, he ate a little of that.  It went on all day like that.  And you can’t say no. He can’t help it.  The frustrating part, along with being run ragged, is seeing his face when I put the food in front of him and he can’t choke it down.  It’s not that he isn’t hungry, he is.  It’s just that nothing is appetizing.

On the other hand, we have had pulses where he ate pizza for breakfast, lunch and dinner the entire pulse.  Some kiddos fixate on bacon.  Some kids it’s fast food.  And there is just no getting out of it.  People accuse us of letting our child control us.  This is not the case.  The Dex is ruling, and I challenge anyone who disagrees to take my child for a few days on a Dex week and try it their way.  BECAUSE I WAS THEM.  I DID TRY IT.  AND I LOST, AND SO DID RYAN.

He started this current pulse Tuesday night.  He ate nothing for me except goldfish crackers until yesterday afternoon, when he ate 6 pieces of pizza in one sitting.

But worse than food issues is the mood swings.  When Ryan was first diagnosed when he was 2, he was on Dexamethasone for 29 days straight.  He spent a large amount of that time curled up in a fetal position in the corner of his crib, crying and moaning in pain.  The worst of this is that as a parent, you are still reeling from the diagnosis itself.  You are only able to do what you are told, the doctors are running the show.  You don’t know enough to even advocate yet, you don’t yet know what’s normal and what’s not, you are barely keeping your head above the water.  You don’t have a support system yet.  I remember being so distraught about his clear discomfort, but not knowing how to approach this man who now held my baby’s life in his hands.  All I could do was trust him.  

We got through that time, and at relapse,  were placed on a protocol which, while Dex was a major component, only required pulses, not a continuous 29 days.  

Now we are in Maintenance, doing it once a month.  Last month was bad.  Ryan cried off and on the first couple days, lots of stomach pain, refused to be away from me, insisted on laying in bed with me, all day, with at least half of his body touching mine.  On that Friday, he cried for 2 hours because of some tiny, insignificant (to me) thing that happened.  Saturday, I looked at him, I just LOOKED at him, and he cried for 4 hours.  FOUR SOLID HOURS.  Finally he cried himself to sleep.  The next day I called the attending and told him either he was going to allow me to sedate Ryan if it happened again or he was going to have to sedate ME.  Although the doctors don’t really comprehend the severity of the whole thing, we came to an agreement, which our primary oncologist is also on board with.  For the last 48 hours of that pulse, Ryan slept 37 of them.

This time has been easier. I was able to increase his Potassium intake.  I added in nausea meds and Ativan.  He has not been as clingy, has kept to his regular routine.  The only thing is that his “GO” button is stuck, and he has chattered incessantly all week long.  Our internet went down for 12 minutes, and that set him off a bit but it got fixed.

I used to try to manage a regular life around Dex pulses.  I have found it much easier to just ease up on life during these times lately.  He is not going to starve to death.  We don’t HAVE to go to the party.  Errands can wait.  Pizza can be delivered.  It is better for Ryan, and for me,  if we stay home with the air conditioner on and the lights low and eat pizza and snuggle and listen to music.  We go at his pace now, and the Ativan really helps.

But it is heart-wrenching to see the medication take control of his little body.  It’s tough to be locked down, however self-imposed it may be.  He wants his mother. So I try to be here.  If he picks up something to perseverate on, I do the best I can.  He spent Wednesday night with his dad, and last night at my parents’, and is back with his dad now for another couple hours.  He will be tired when he gets home, and cranky.  But he took his last dose this morning,and tonight, well, tonight we will snuggle because I’ve missed him.

 

 

 

“It Was a Normal Day, and then It Wasn’t”

Again, before I jump in, I need to credit the title. These words were spoken by Reverend Koreen Guillermo, in one of the very first sermons she preached here in El Paso, and she spoke them in very much the same context in which I use them today.

We are days away from the first “crapiversary” of Ryan’s relapse.  This is technically the 8th crapiversary we have plodded through, although the 7th blew past us because I was otherwise occupied.  On the 7th crapiversary, September 16, 2015, we had been inpatient for two of what would end up being a total of over 40 days.  We admitted on September 14, and as of the moment we were admitted, we were technically homeless.  We had lost our house, and I had no income and no money saved to rent a new place.  Ryan’s address for school purposes was the hospital.  I was receiving some of my mail there.  On my nights off, I stayed with my older son at my ex-husband’s house while he stayed with Ryan.  We were busy preparing for the most intense phase of Ryan’s front line chemotherapy, so I had little time to dwell on the 7th crapiversary of the initial diagnosis. (Obviously we aren’t homeless anymore).

On Sunday, June 14, 2015, I took Ryan to the urgent care clinic because he was complaining of stomach pain.  Before we left, I called Children’s to check in with the resident, as Ryan had his 2 month oncology follow-up scheduled for the end of June.  He told me to go on to urgent care, but to call the pedi-onc clinic in the morning so they could see him early Monday morning.  Urgent care said Ryan’s stomach was distended, that he was likely constipated, and to take him home, give him some Miralax.  I did so, then called the pedi-onc clinic as directed on Monday morning.  The oncologist asked me to bring Ryan in through ER, because he wanted an abdominal ultrasound.  We did that, and they drew labs. They agreed with the constipation, said the labs were fine, and sent us home with directions to keep the appointment we already had scheduled for the end of June.  I was unhappy with this turn of events, so I called our pediatrician, who said he wanted Ryan in his office Tuesday at 1:00.  At 12:15 on Tuesday, June 16, the phone rang and our oncologist said “I need you to pack for an admission.  Ryan’s platelets are 90,000.  Pack and come straight up.”

Later that afternoon he told me that when the blood was examined, some of the white cells looked funny, so the draw had been flagged for further study, and that the cytogenics showed that the Leukemia had returned.  The risk indicators were all favorable, and this was a return of the same type of Leukemia.  As everything had already been done and studied, we were set up to have a new port placed and begin re-induction on Wednesday, June 17.

Those are the hard, medical, irrefutable facts that came with the relapse.  Here is the rest.  I had known since April that we were in big trouble.  We had skin testing done at the allergist, and at the end Ryan’s face broke out in petechiae.  He was crying, they said.  It happens, they said.  Ryan has had many, many tantrums in his life, and none of them have ended with his face covered in purple spots.  The pedi sent us for labs, just to be safe.  They were normal.  We had them done at Children’s, so the oncologist reviewed them.  Nothing of note.  But I knew.  In my heart, I knew.  Everyone told me I was being dramatic.  Looking for attention.  Borrowing trouble.  Blame anxiety.  Blame PTSD. Lara is just creating a problem where there isn’t one.  Get a grip, everyone said.   Don’t worry, they said. It will be fine.  And then we got the news.  What I said in the days to come, to EVERYONE,  probably does not bear repeating.

Next asinine statement:  “At least you know what to expect this time around”.  Yeah.  I know what to expect, alright.  Hair loss.  Seizures. Trouble walking.  Isolation.  Nausea.  Infections.  Constipation.  A child who simply does not understand what is happening or why, who cannot verbalize what he is feeling, where he hurts, and when enough is enough and he just wants to be left the fuck alone.  Knowing what to expect did not help, in fact, it made it much worse for me.

But we slid on into induction, and after 6 or 7 days, we discharged.  Ryan came home very nauseous, wouldn’t eat or drink, and woke up one night and threw up in bed, and was unable to walk to get up and come get me.  Once Ryan goes to bed, I don’t generally check on him, I can hear if he gets up.  But I didn’t hear him that night.  Still, the mommy gut kicked in, and for the first time in months, I looked in on him before I went to sleep. There he sat, in a pool of vomit. Shawn was with me, and we cleaned Ryan up, gave him some Zofran, and put him back to bed.  (He will never sleep alone again.  I’m not sure how I plan to handle that when he is 25, but we will cross that bridge when we come to it). The next morning, we admitted.  He was taken up in a wheelchair, as he could not walk.  I had no idea what train wreck was in our immediate future.  Induction had called for a chemotherapy agent Ryan did not have the first time around, and it knocked his immune system out completely and immediately.  Ryan had had diarrhea for about 12 days by that point, and our regular oncologist was not attending the week we admitted.  When he came on duty, several days later, he immediately called in GI doctors, a nephrologist, and the infectious disease doctor.  Ryan was diagnosed with Neutropenic Colitis, a bacterial infection in his gut.  He was eating nothing, we could not get the diarrhea under control, and he was in awful pain.  He ended up on TPN (nutrition via IV) for 10 days, due to a need for complete gut rest, fighting for his life.  I can promise you this:  when you do not know if your child is going to live or die, 3:00 in the morning is not a fun time at all. I sat with my baby at night, begging him to fight harder, begging him to hang on, begging him not to leave me.  Begging him to stay the hell with me.  Helpless.  Terrified.  And then he turned the corner. The attending, Dr. Lacaze, came in that day  with the BIGGEST smile on her face and said “Hey, Ryan!  This is THE BEST DAY EVER!!” I will never forget that smile.  Not until the day I die.  And I remember thinking “Not today, cancer.  You don’t get my baby TODAY!!!”

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This is what our hospital room looked like.  This day he had fluids, TPN, and Lipids hanging on the right, plus an extra pump for medications that needed to be pushed.  Platelets were hanging on the left.  He was hooked up to the monitors 24/7.

No.  I did NOT, thankfully, know to expect THIS.

As the Neutropenic Colitis resolved, and his ANC started to rebound, I noticed that his port site looked odd.  When he had his needle change, we realized that the incision had not healed correctly, or at all, since his counts had crashed so rapidly.  It was infected, and the port would have to come out.

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So just about the time we thought we might be going home, this baby, who had just fought back from what could have been a fatal infection and was still unbelievably fragile, was going to have to undergo, immediately, surgery to remove the port and insert a PICC line.  And then, he had to have an IV placed in his OTHER arm, because some of the meds he needed could not be run through the same line.  10 days later, the PICC line was removed, and Ryan underwent his 3rd surgery in just over a month to have a new port placed.

Since then, things have mostly gone well.  A few bumps along the way, but Ryan has overcome them.

So yes.  We will deal with the crapiversary.  It absolutely sucks.  But it’s also cause for celebration.  We are winning.  Ryan is winning.  Me and Ryan, we are rocking this.  Not every day is a party, but you can bet the bank that we get up every day and we FIGHT THIS MONSTER TOGETHER.  We draw strength from each other.

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“A Little Bit of Normal in My Life”

This isn’t going to be one of those fun and games posts, but when I started this, I said I was going to write about our cancer journey, and this is part of it.  There is a “culture”, if you will, in the world of pediatric oncology.  It is the same in the deaf community, in the Down Syndrome community.  We face a certain set of challenges.  We speak our own lingo.  We share the same hopes and dreams and fears.  We win together, and we grieve together.  We celebrate together.  We mourn the lack of funding, and we cheer as more strides are made in treatment for our kids.  And we bust myths.  So that , I think, is where I will begin.

When I was you, before I was who I am now, if I had even bothered to think about kids with cancer, which I didn’t, these are the beliefs I would have had:

1.  The “cancer ward” is a sad place.

No.  It’s not.  At least, not generally.  You see the posts now about kids riding trikes in the hall, riding their IV poles, and that’s part of it.  Mostly, describing it now, I would use the term “roller coaster”.  It’s home.  It’s life.  It’s mostly hopeful, but sometimes it feels hopeless, scary.  Because life goes on, only for our cks, it often goes on inpatient.  Our kids have ports and PICC lines and IVs.  They have fluids hanging.  It’s not unusual to see an IV pole with 3 or 4 pumps, 5 or 6 bags of stuff running.  Chemo, antibiotics, fluids, blood products. Yes, they ride bikes.  They do Build-a-Bear.  They do Zumba.  They do arts and crafts and build things and go to school.  Us parents form bonds, and we hang out in the kitchen, in the family room, at the nurses’ station, in the hallways.  The nurses and CNAs know our kids’ food preferences, sleeping habits, favorite songs, and the best way to get oral meds into them.  They are family too.

2.  Pediatric cancer is a death sentence.

No, it’s not.  Not any more.  There are no guarantees, but it’s not a death sentence.  When Ryan was diagnosed, my first question to our pediatrician was “Is Ryan going to die?”  He said no.  Confidently.  He said “He’s not going to die, but this is going to be the hardest thing you’ve ever done.” And so far, he’s been right on both counts.  The misconception is this: cancer kills kids.  No. It is mostly NOT the actual cancer that takes our babies.  It is the side effects.  Allow me here to leave pediatric cancer in general and focus on Leukemia:  Leukemia is a blood cancer.  Lymphocytes develop incorrectly and then they go rogue, first filling up the bone marrow, and then overflowing into peripheral blood, thus crowding out platelets, red blood cells, neutrophils, monocytes, all the good cells.  The only way to treat blood cancers is to attack the rogue cells. Unfortunately, and this is the tragedy right now, the only way to kill the rogue cells is to wipe out ALL of the blood cells, thereby leaving our kids completely immuno-compromised.  Basically they have the immune system of a newborn, premature baby. They are left susceptible and wide open to infections, and this is one of the ways lives are claimed.  Infections take hold, and sometimes the immune system coupled with interventions just is not enough.  Additionally, the chemotherapy can cause anaphylaxis, major organs are compromised and shut down, and any number of other things can go wrong.  It is here that we face our biggest dilemmas:  what are our kids allowed to do?  It is a very personal decision, and one many parents agonize over.  The message boards overflow with this topic in the summer.  Pools?  Hot tubs?  Parties?  For me, it was easy.  Ryan does what Ryan wants.  Ryan gets to live his life, however much of it he has.  Nothing is guaranteed anyway, and it is more likely that I will get hit by a bus than that Ryan will die because I let him swim.  But this is the crux of the culture. Parents of kids with Leukemia live for and by the data.  We get weekly blood draws that tell us the ANC (how strong the immune system is this week), Platelet counts (how likely are they to bleed to death if they fall off the camel, have a nosebleed, or get scratched by the dog… Sorry, I was starting to depress myself, humor is necessary), and hemoglobin (red blood cells carry oxygen, and if HG is low, our kiddos are more tired and their heart rates elevate).  So we leave clinic each week clutching this week’s results, and we make decisions.  Ryan gets to swim. He gets to go to church and Bible School, to the playground.  He got to go to Peter Piper when his ANC was zero because it was his brother’s birthday, although for any other occasion, we’d have rescheduled that one.  Cancer moms know what it means when there is an event and another mom says “Oh, I think we will have to skip that, it’s a Dex week”.  That translates to “We are housebound because every time someone looks at my child he screams bloody murder”, or “I have to run to 8 fast food restaurants to find the exact combination of food my kid wants”, or “I just bought 27 pounds of bacon”, or “my child is sleeping 18 hours a day”.  Cancer moms know that Dexamethasone, and to a lesser degree Prednisone, was developed by Satan himself.  And they don’t want to party with their own Dex kid, let alone mine. So they (gratefully) accept a rain check.  I was once criticized by my brother-in-law for missing family events.  He just didn’t believe that Ryan’s issues were for real.  So rather than say “**** you”, I decided to take Ryan to his grandson’s birthday party.  20 minutes in, Ryan was on the floor, throwing a screaming, raging fit.  Too much noise, too many people, too much activity. I asked my brother-in- law to pick Ryan up off the floor for me, then I took my child, walked out the door, and have not spoken to my brother-in-law since that day.  Some cancer parents lock their children down, don’t let them do anything.  They live in constant fear.  Some look for a middle ground. Some evaluate every activity.  When cancer moms are together, we keep an eagle eye on all of  our kids’ energy level, color, bruising time, clotting time.  At the hospital, we know each other’s primary doctors, which nurse has which kid every day, and often which kid is neutropenic and supposed to be WEARING A MASK, RYAN!!!!

3.  Pediatric Cancer is well funded.

No.  It’s not.  It’s woefully, tragically, unfairly and unreasonably underfunded.

4.  When children do die, the rest of us are unaffected.  

This is the biggest tavestry of all.   When a child earns their wings, we ALL grieve, and we ALL suffer from survivor’s guilt. Our heart breaks EVERY TIME.  It doesn’t matter if we knew it was coming, or if it was sudden. Don’t tell us to mind our own business, or to be grateful we have ours, or that we are too involved.  This is why:  I spend more time with the children and families at the hospital  than I do with my own family.  Also, because the next time it might be MY kid, and don’t you think for one second that I believe mine is exempt.  The next child’s life claimed could be Ryan.  I live with that.  I have to. We cry in each other’s arms at midnight ( what, you think we SLEEP at midnight…no, we all are awake for midnight vitals!), we are in the kitchen getting coffee at 5 am (well yeah, 5 am, because our kid didn’t go back to sleep after 4 am vitals and labs), we know when there is a new diagnosis, because that is WHAT WE LOOKED LIKE WHEN WE FOUND OUT…WE WERE THEM.  Privacy is thrown to the birds.  We do it all together…laugh, cry, pray, celebrate, and grieve.  We say to you “YOU DON’T KNOW HOW I FEEL RIGHT NOW!!”. You CAN’T know, and we don’t WANT you to know.  We aren’t being mean, we would not wish this on our very worst enemy.  We will close ranks, protect eachother, take care of each other.  It isn’t because we don’t trust you, but that we have traveled somewhere very dark and scary together, and there is not always a good reason to drag you there too.

5. I am somehow stronger than you. You don’t know how I do it.

Easy.  I have to.  Ryan’s life depends on me DOING IT.  You would do it too.  The alternative is much worse.  Please don’t say those words to us, particularly if you are a mother.

I spent 3 hours today with Ryan and Nathan (and Nathan’s brother Michael).  Nathan and Ryan are both relapsed CKs.  And so they got too tired.  And too cold.  And weren’t too hungry. But doggone it, they swam.  And blew bubbles. And played in the grass.  And loved on Baxter.  And ate corn dogs.  And swam some more.  We had NORMAL today.

And I managed to NOT get photobombed by Michael when I was taking selfies with the dog.

” A Little Messed Up, But We’re All Alright”

Before I begin, I need to credit the title…it is a quote from the song “American Kids”, by Kenny Chesney.  I’m not sure yet what direction this might go, but it seems an apt enough title for nearly any direction.

I haven’t been able to write.  My anxiety and depression have been bad.  My head has been up my ass.  I’ve been focusing on all the wrong stuff.   Haven’t had that “flash” that says “write about THIS”.  The other day my friend Micha said “Just WRITE!”  So we will give it a shot.

We got a new dog a couple weeks back.  I have been trying to get a “companion animal” for Ryan.  I had some pretty strict criteria for this dog.  The shelter had an adoption event, so Ryan and I went.  I wanted a small to medium sized dog.  We are now the proud owners of a large dog.  LARGE.  I named him Baxter.  David Baxter is a homicide detective in my favorite crime series, the “In Death” series, by J.D. Robb. 20160523_152807

 

That’s Ryan and Bax.  Not the best picture, but I failed Technology 101, and I can’t find the rest of the pictures.

Ryan is on a chemo hold.  His white cell counts dropped sharply last week, plus his liver is not working correctly, so he gets a break.  I had finally gotten him back in school, and was looking forward to some productive time, but our oncologist yanked him back out of school last week, and Tuesday he told me Ryan was done for the year.  Sigh. But ok.

Shawn had some medical issues about a month ago. He went to Anaheim on a band trip and texted me on the Sunday that he needed to go to the doctor as soon as he got off the bus on Tuesday.  Upon questioning the child, it turns out that he had been  symptomatic for a couple of months.  And had said nothing. So it was good that he was in Anaheim, where I could not physically reach him to throttle the daylights out of him.  But all is well now.  On the topic of Shawn, 2 weeks ago I made a mild suggestion that he get a haircut.  He thought not. 6 days later, after church, he HAD TO GET A HAIRCUT RIGHT NOW, MOM.  Seriously?  This is MY emergency WHY?  But we got the hair cut.

Dang it. I’m trying to put a picture here but it won’t stay.  IMG_20160515_150244

Ok, there it is.  STAY, picture.  Yes, same child.  I found him under a mop.

As far as me, I’m ok. Some days I am manicky, some days I’m depressed, some days I spend hours worrying about all the things that could go catastrophically wrong. The good news is that I spend less time hiding during greeting time at church these days, am getting better at letting people touch me.  I can’t promise what might happen tomorrow, but so far I’m ok today.

“A little messed up, but we’re all alright…”

Nail. Head.  Thanks, Kenny!!!! 

That’s Why I Was Hiding in the Bathroom!

“I didn’t get to hug you during greeting time today!”

Yeah.  That’s because I was hiding in the bathroom during greeting time because I DIDN’T WANT TO BE HUGGED TODAY.

The United Methodist Church is a huggy place.  And thanks to some relationship glitches, and PTSD and anxiety, I now have issues with hugging.   The people in my daily circle have come to terms with this, and they watch my body language for indicators that I’m not going to lose it entirely if they try to touch me.  At my church, if I disappear during greeting time, it’s a good bet I’m hiding SO DON’T TRY TO HUG ME LATER.

Last week I was in a church I visit occasionally.  It was difficult for me to show up, and people, and adult, but answering to my mother about why I wasn’t in church with my family ON EASTER SUNDAY was slightly more frightening, so there I was.  Among people whom I had not seen in months, which is just a hugging storm brewing.  So at greeting time, on Easter Sunday, I was hiding in the bathroom.

But because the United Methodist Church is a huggy place, as soon as the service was over, before I could run away, six people came charging up to me, all huggy, saying “I didn’t get to hug you during greeting time.  How are you?”

I was JUST FINE until you got all huggy.  Now I have to go home and take a 3 hour nap because I have exhausted myself tolerating all this HUGGING.

THANK YOU, and GOOD NIGHT.

Hold on to that camel, your platelets are not THAT stable!!!

The fair has come to El Paso.  And it’s the real deal, too, just like the ones they have in REAL Texas cities, with rides, a petting zoo, midway type games, ridiculously priced food, and camel and pony rides. So yesterday, while we were cooling our heels in the pedi-onc clinic at our hospital, FOR THE THIRD TIME THIS WEEK, the Sun City Fair was getting ready to open.  We were at the clinic, again, because Ryan came home from his Dad’s with a mouthful of blood and a rash on his chin.  He had to spend an extra day with him because I was knocked flat with a kidney infection (TOTALLY YOUR OWN FAULT, MOM, BECAUSE YOU DON’T DRINK ENOUGH WATER!  Thanks, Shawn, for the support… He didn’t laugh when I said I like Dr. Pepper and coffee flavored water).    Anyway, the pain meds made me loopier than usual, so Raul kept Ryan, and returned him to me late yesterday morning.  With a mouthful of blood.  Which necessitated a call in to the hospital, and not one but TWO oncologists directed us to come in RIGHT NOW.  Labs were run, and they came back showing at least a small measure of recovery.  Enough that they let us off of house arrest,  and put Ryan on the OR schedule for Wednesday.  But more on that another time. No idea why his gums were bleeding.

So Ryan and I got up this morning, well, actually closer to noon, and this conversation ensued:

Me:  Ryan, would you like to go to the fair today?

Ryan:  No. No fair.  I can’t do it. Grandma Grandpa’s house only.

Me:  But we aren’t going to Grandma and Grandpa’s until 5:30.  We could do it before.

Ryan:  No go.  I can’t do it.

Me:  There will be camels and ponies and pigs and goats.

Ryan:  I can do it!!! We go to the fair!

So we gathered our stuff, and after a call to my dad to make sure I didn’t get lost, and a call to Raul because he kept texting me about Shawn and I was confused, and a stop at the bank (Because we need money to feed the GOATS, Ryan!), we were off.

Got there, got tickets, got in, and Ryan saw the first ride, the kiddie cars.  He was jumping up and down, pointing, excited, so the ride attendant got him settled, and the second the ride started, I dissolved in tears.  The people around me probably thought I was some kind of lunatic, and they wouldn’t have been too far off. But you see, we spent 3 out of 5 days this week in the oncology clinic, with Ryan’s blood counts setting record lows, and I wanted, so badly, to do this with him, and THERE WE WERE!  So I HAD to blubber all over the place.  For a little while, just for a time, Ryan was just a normal kid doing normal kid stuff.  So he rode some more rides, and then it came:  “Mommy, I want to see the camel”.  Well, I had promised one, hadn’t I, so off we went on a camel hunt.

And there it was.  The camel. Ryan about trampled everyone around him trying to get to it.  I gave him his $5 for the ride, and he handed it to some man walking by, who had the good sense to wonder why some small child was handing him $5, and he gave it back and pointed Ryan in the direction of the camel attendants.  So up on the camel he went, and everything was going just fine, until he let go of the camel with one hand.  And into the relative silence of the camel riding area, I hollered “HOLD ON TO THAT CAMEL, YOUR PLATELETS AREN’T THAT STABLE YET!!”

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Stunned silence while people processed.  The camel guy ignored me.  Ryan put both hands back on the camel.  A few people looked at me questioningly.  And the ride was over.  And we went to pet and feed the goats. I like goats.

It intrudes.  Cancer always intrudes.  I am doing OK, and then he lets go of the camel.  Or gets whacked in the head with the Longhorn’s horns (yeah, that happened today too).  Even when you are at the fair, or at the Easter Egg hunt, or at Peter Piper, you are watching.  You are constantly evaluating activities, running the numbers, weighing the Pros and cons.  Ryan doesn’t live in a bubble.  Other cancer moms lock their children down.  And it is a very personal choice.  But not me, we decided on day one of the initial diagnosis that we would allow him to live every day to the fullest.  Ryan would never tolerate anything less.

HOLD ON, CAMEL, RYAN’S ON BOARD!!