Please Quit Licking the Dog

I have had this on my mind a lot lately, and I am frustrated because I am not able to convey what I am feeling.  As I drove home from Oncology clinic yesterday, listening to Ryan jabber mindlessly, I was reminded yet again of the huge difference in the developmental levels of my boys.  They are only 5 years apart, but it’s more than that.  It’s an ocean.  It’s an eternity.  It’s parallel lines, lines that will never quite meet.

I wonder sometimes about how special needs parents reconcile this.  Ryan is 11, should be in 5th grade by now, but due to retentions because of school missed due to Leukemia and chemo, he is only in 3rd grade.  This is OK…it’s what is best for Ryan.  Developmentally, he isn’t even typical of a 3rd grader.  I’m not saying this is awful.  I’m just saying it’s hard to face sometimes, and it’s hard to keep up with ALWAYS.

Let me toss out a few examples:

1.  One morning I had to put Shawn on a plane to San Antonio.  He flew with his teacher and a classmate.  I wanted to grab him and beg him not to grow up so fast, not to be so independent.  An hour later, I dropped Ryan off at school, where his teacher told me they are having difficulty with his independence.  He won’t do ANYTHING by himself without one to one attention.  I am begging him to be more independent, wishing he would grow up just a bit.

2.  Shawn will be a senior next year, so college brochures are strewn all over the apartment.  We spent an hour the other evening discussing them, and then I grabbed Ryan for his homework, which was sight words.  Hot, pot, not, cot…

3.  Career choices must be discussed with Shawn.  Midway through the most recent conversation, I looked up and Ryan was licking the dog.  I had to stop with Shawn, and have a short conversation with Ryan about why it’s not OK to lick the dog.

4.   They like me to listen to songs they like.  Last night Shawn put headphones on me so I could hear this new composer that he found that writes music in 11/8 time.  Ryan asked me a few minutes ago to listen to Ernie and Bert sing Rubber Ducky.

If this were simply an age thing, as Ryan gets older, the gap would narrow, until they are both in their 20’s and it would be gone.  But that’s not the case.  It’s never going to be the case.  Shawn will never have a sibling his age, it will never be quite even.  Shawn will eventually be Ryan’s guardian.  And this, y’all, this just breaks my heart.

Shawn and I had a conversation tonight about things he might do different as a parent.  I asked, because I am curious.  He said that the number one thing he would do differently is make sure that his children have a childhood.  Heart broken much?  I wish that I could go back, wish a childhood for BOTH of them, one that wasn’t tarnished by disability and disease, that fairy tale childhood we all dream about.  Shawn knows, as do I, that I have done the very best I can do given the cards I have been dealt. That doesn’t always help much.  Shawn has learned a lot about life due to Ryan’s Down Syndrome and his Leukemia.  Life lessons that he will need later.  But yes, his childhood was ripped from him.

Ryan worships Shawn.  But they are stuck right now at an uncomfortable place. Because Ryan is not a typical DS kiddo, Shawn’s expectations are high.  Shawn has little tolerance for some of Ryan’s more annoying behaviors, and he is still jealous and resentful at times.

Today he was upset because he has a sublingual nodule that he wants removed and he wants it removed RIGH NOW.  But we have to go through the process, and he said today how it’s not fair that Ryan never has to go through the process, everything is dealt with immediately.  I told him that if he had cancer everything would also be an emergency and dealt with immediately, but since he doesn’t he just has to jump through the medical hoops like the rest of us mere mortals.  He knows Ryan is OK right now, so he is safe lashing out at me a bit.

I don’t know how much the gap will ever narrow.  Shawn is going to be more of a parent to Ryan one day then a brother.  And just right now, I can’t reconcile it, I can’t swallow it, and it is not OK.  I can’t change it, but at this moment in my life, it is just not OK.

Advertisements

Is That All For You Today?

I was a Special Education teacher for the majority of my career, spending my last 4 years in a high school life skills classroom, which included students 14-22 years of age who had moderate to severe disabilities.  One of the purposes of the unit was to prepare my students to function in the community.  This includes using public transportation, eating in a restaurant, and making purchases.  It is this last choice that we are going to talk about today.

In the student’s IEP, the goal may read “_______ will purchase an item in a store with no more than 2 verbal or visual prompts 85% of the time.”  Following the goal are objectives:  what has to happen in order to master the goal.  Obviously, students must choose an item, hand the cashier enough money, wait for their change.  All there is to it, right?  Um, NO.  Watch this:  When I purchase an item, ALL the following things take place.

1.  Select the item

2.  Get in line.

3.  Wait your turn.

4.  Greet the cashier when it’s your turn.

5.  Put your item(s) on the counter.

6.  Listen for your total.

7.  Hand the cashier the appropriate amount of money.

8.  Wait for the cashier to hand you your change, your receipt and your purchase.

9.  Thank the cashier.

10.  Get out of the way.

11.  Put away your change and receipt.

Who knew?  This process, which seems so routine for most of us, is fraught with land mines for our ADHD kids, our kids on the spectrum, our sensory processing disorder kids… Think about how you feel when the store is too hot, the line is too long, the guy ahead of you is making you batshit crazy.  Times that by 1000.  That’s our kids.  Look at all the skills we apply.  Turn taking.  Greeting appropriately.  Communication.  Math skills.  Decision making skills.  Every single step listed has to be pretaught, and mastered, in order for a successful experience.  Yes, our kids have watched us buy stuff. For most kids, that’s enough.  I never had to formally teach Shawn to buy stuff.  But Ryan…let me tell you about Friday.  Because even when you think its OK, you should expect the unexpected.

We stopped at the Valero for gas.  Approximately 0.5 seconds after I paid for the gas, Ryan says “I want apple juice.”  I looked around the store.  It was empty. The cashier was friendly. I had a couple dollar bills in my purse.  We’ve been working on parts of this.  Let ‘er rip, I thought.  It’ll be fine, I thought.  So I said “OK, Ryan, go get an apple juice.”  I watched, he returned with apple juice. #1 – 100% today.  I handed him $2, and said “go get in line”.  I moved off to the side to watch.  He went to the cashier.  #2 – 100%.  The house is rocking, right? Well, no.  Because then it broke down, and guess what, it’s my fault.  I made an assumption.  The cashier asked him for the juice.  Radio silence.  Ryan just looked at her. She tried again, reached her hand out ( perfect visual prompt).  He gave her the money.  She asked again for the juice, at which time I verbally prompted: “Ryan.  Give her the juice.” He did, but why was this a problem?  Well, we do a lot of our practice in the Bistro at Children’s.  In the Bistro at Children’s, they don’t scan the items.  Ryan never has to let go of his juice.  What about the grocery store?  Well, we have a cart.  Item goes from hand to cart, THEN to cashier.  It’s not in his hands at the register.  Small detail, but important distinction.

So now the cashier’s got the juice, she’s got the money.  I stand down a bit.  And then it happens.  I hear her say “Is that all for you today?”  I register it a second too late.  Ryan’s eyes flash around the store and land on the bin of basketballs.  And he says “No.  Wait.  I need a ball.” And he’s off.  And I’m off.  I’m closer, so I get between him and the basketballs.  Blessedly the store is still empty, so I can take the time to explain to him that he only has $2, we aren’t buying basketballs because he has 3, go back and get the juice.  He doesn’t move.  I give a choice…you can go back and get the juice or we can leave without it.  But he’s gearing up for battle.  I’m down at eye level, because WE ARE NOT GOING TO HAVE A MELTDOWN IN THIS STORE RIGHT NOW, RYAN!!  I’m looking for compliance:  “Ryan, answer me. Do you want your juice?”  “YES”.  Now a short, clear command:  “Go get your juice”.  Nothing happens.  I hold my line, my breath, my position. Absolutely silent. After 10 seconds or so, which he needed to process, he returns to the counter for his juice.  I follow, now I’m in his space, because we aren’t starting over.  The cashier hands him his juice, tries to give him his change, but he’s not paying attention, and now it’s on the floor, and customers are coming in.  Usually I have him pick up what he drops, particularly coins, because hey, good fine motor activity.  But he needs big praise for compliance, and he needs it RIGHT NOW, so I pick up the change, thank the cashier, and walk out telling him what a great job he did picking his juice, thanked him for making a good choice, high five him, put his dimes in his pocket to put in his Batman bank later.

The cashier stayed in her routine, which is important. Ryan answered the question with a perfectly appropriate answer, unlike at church when Daniel asks for joys and concerns and Ryan raises his hand and asks to pray for Rice Krispies.  The cashier doesn’t need to treat him differently.  They don’t need to be friends at the end.  She did exactly right.  Me, an expert in task analysis, I missed a couple land mines.  So we will practice a little more and then we will try it again.

It’s never “just” anything in our world.  What a lot of folks take for granted is a huge undertaking for us.  And for our kids.  I almost drove off without the gas (which I have been known to do with fewer distractions than I had today).  We avoided a meltdown, barely.  I gave it a 50% mastery in the end, given that the last part completely unraveled.

Be patient with each other, y’all, and be kind.  You just don’t know what each other’s lives look like.

A Little Bit of Ryan in My Life

I have been absent for awhile.  It has had to do with a number of things…moving, Ryan’s cancer, Shawn’s achievements, general busyness, a few depressing attempts to write, and the fact that I have not built up the audience I would like for this blog.  So I quit.  But I’m ready to start again.  We will see where it takes us.

Being the parent of a special needs child is difficult.  Being the parent of a child with a chronic life-threatening illness is difficult.  Being a single parent is difficult, and being a parent with anxiety, depression, PTSD and chronic pain is difficult.  Being all of the above at once…well, if there is a word to describe that, my picture will be under it.

I want to talk today about labels.  When someone asks me to describe Ryan, the first words out of my mouth usually have to do with either the Down Syndrome or the Leukemia.  If you ask the people in his life to describe him, they start out with a description of the child himself, minus the labels.  So I thought that today we could address why this happens.

It happens because parents of special needs children bear the brunt of the diagnoses.  We administer medication.  We sit in the doctor’s offices and hospitals.  We sit across the table form our child’s teachers and discuss our child’s disability and all the things they still can’t do.  We cart them to speech therapy and occupational therapy and counseling and physical therapy.  We push the wheelchair.  We feed through NG tubes.  We connect and disconnect IV lines.  We are entrenched.  Our daily lives revolve around our child’s needs. In my case, I can’t work, don’t have a social life, my only time with other adults is church or the hospital.

So when someone asks me about Ryan, I tell them the things that are second nature.  My answer might go like this:

Ryan is eleven.  He has Down Syndrome and Recurrent Leukemia.  His immune system is compromised, he has peripheral neuropathy and transfusional hemochromatosis and methotrexate induced leukoencephalopathy.  He has a substance induced (steroids being the substance) mood disorder and anxiety and ADHD.  By this time, the person who JUST WANTED AN IDEA OF WHAT TO GET RYAN FOR CHRISTMAS, FOR CRYING OUT LOUD , has tuned out.  Along with not knowing what 97% of those words mean, it wasn’t what they wanted to know anyway.

Instead, this is what I should be saying: Ryan is eleven.  He is the most loving child I have ever met.  He loves music and singing and dancing.  He loves to play basketball and soccer, and he is besotted with his dog.  He enjoys telling knock knock jokes and the fact that he has no idea what he is talking about just makes them funnier.  He likes to play animal sound guessing games when we are in the car for long periods of time.  He likes the Wiggles, Sesame Street, wrestling and Steve Harvey.  If you want a hug, he’s your guy.  Ryan blesses the lives of everyone he touches.

It’s hard for parents to see beyond the labels sometimes, hard to switch from just surviving to true enjoyment of all the wonderful things that make your child a treasure.

Don’t overlook that, y’all.  Don’t do what I do and present your child as simply a sum of diagnoses.  He or she is so, so much more than that!!!

 

 

 

“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.

13769438_10209091570623722_7126715375938305833_n

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

 

 

 

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!!!”

20150703_171504

 

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.

20150712_135808

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.

20160601_114840

 

“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.