Jul 25, 2015

See a child screaming in public? Don't glare at them. Their momma might write a blog post.

This has been bouncing around in my head since seeing someone flat-out glaring at my son (nickname Bug) yesterday morning when he lost control of his emotions in public following a morning of doctor's appointments, pokes, and other things with which he was just done:

I am "that" child. You know - the screaming one you just glared at. You can't miss me; you didn't miss me. I might be little, but I know angry looks even if I don't know you.

I've never screamed this loudly. Every cell in my little body is crying out in frustration and fear. Maybe if I'm loud people will just listen. I've never screamed for this long. I scream that I want to leave; that no one around me can talk. Everyone, please just stop talking. Stop talking. Stop touching me with pokey things, with cold things. Stop telling me to open my mouth and say “ah”. Stop saying that “it's okay”. Can't you hear that it is not okay?!

Just stop talking. Don't hold me. Holding me feels like more pokey things when I'm this upset. I just want to go home. Momma? Nana?  They're trying to make it better but they're also trying to talk to the doctor. I don't want them to talk to the doctor. When you big people talk, more things happen to me that hurt or make my tummy upset. Or I get pinned again. Everyone, just go away. I just want to be at home. Stop talking and take me home! Can't you hear that it is not okay?

Maybe if I'm louder, someone will listen. You big people use words I don't understand and then tell me “shhhhhhh, it's okay”. No it's not!! Okay, I'll scream some more. Maybe someone will just take me home and out of this place of pokes and medicines and numbers and blood counts and being pinned to those big examination tables and people in my face and complete, bone-wrenching helplessness.

Someone just listen. Someone just do what I want. Give me some control...anything. Take me out of here. We're going? No! I like it here now. Leave me here. I'll live here. I don't need a pillow, I'll live here. I want to stay here! Someone listen to me! Why are we going? Why won't anyone listen! Ahhhhhhhhhh!!

Momma, why did that person look mean at me?!

I saw that. This momma bear couldn't miss the menacing glare that woman leveled at my little son as we hurried by; him screaming and writhing in my arms as the big feelings bubbled over. Her furrowed brows sat atop glaring eyes that I'm sure twinkle when she smiles, but at that moment her lips were pursed in disapproval as she shook her head and glared.  Her face demanded why can't you just control that child? Make him stop screaming!! You're in public, for goodness sake.

I bristled. My feathers ruffled. I wanted to fucking slap her. And I'm a pacifist.

I knew we were in public. I also knew what “that child” had already endured this morning. He woke up excruciatingly early and heard these words: “You can choose. Either I put the emla cream on you so the poke is numbed or it will hurt more when they have to access you. I know you don't like the cream, but please let me put it on you!!”

He is 3 years old. My Bug is 3, and he had to choose between cold numbing cream applied to his skin or a painful poke. I wish he had just had to choose what kind of cereal he wanted.

After choosing the cream and for the first time actually allowing me to put it on him without a fight, “that child” sat in a car that Momma maneuvered through a rain storm as she, Nana, and Twinkle (sister) went with to the doctors. He was then pinned to an exam table while crying as nurses poked him with a needle, adhered that needle to him with a massive sticker that hurts mightily when it is removed, had blood drawn, then had to wait for another appointment where the grown-ups all talked about things that could hurt and the sticker was taken off.  He knows the word “leukemia”, but he doesn't know what it means. He is 3 years old. He shouldn't know the words “cancer”, “chemotherapy”, “treatment”, “accessed”, etc. He shouldn't know how how to correctly pronounce the names of his medicines. But he does.

And yesterday morning after hearing his name come over the waiting room intercom as yet another staff member summoned him back to see another doctor, Bug was just DONE and overwhelmed and letting everyone with eardrums know.

And she. glared. at. him. But she don't know what his morning was like. She don't know that 6 months ago he was completely bald thanks to doxyrubicin, or that he puked last week after having chemotherapy put in his spinal fluid, or that he loves Spiderman and adores his baby sister. She didn't know what he has been through in the past year. Her only exposure to my precious boy was him rattling her eardrums painfully as we tried to just get him home.

I am “that mom”. You know – the one with the screaming child whom I “can't control”. No, I can't. But he's gone through absolute hell over the past year and I want to scream to. At that lady, at the situation, but mostly at an entire society that is afraid of children's big feelings.

That's right, I said it: we as a culture are terrified of letting children experience and express their big feelings. It feels unjust to humanity to me that part of becoming familiar with the mores and laws of this culture means that children learn to quash their big feelings when around others. Why? Why do so many adults experience discomfort and fear at encountering children's big feelings? We want to fix it right away; to make it go away and bring back the calm. Why? I suspect it is due in part to kids' big feelings threatening to bring out the same in us that we've spent so many years suppressing that if it comes out, it will come out in a way that is frightening.

Maybe children's big feelings originate in something environmental, a mental health diagnosis, being plain overwhelmed, not enough sleep, an annoying sibling, adults failing them again, cancer, food dye....whatever. The point is not that children experience big feels. We all know they do (c'mon, let's be honest – so do we as grownups and we know that too). The point is that when these big feels become obvious, we as a culture do our level best to discourage children from expressing their big feelings. “Shhhhhhhh now, it's not that big a deal.” “Hushabye, calm down.” “Honey, there are other people around.” Be honest – who here has said that to a child who is displaying big emotions or negative behavior? Now let's be honest about ourselves: how helpful are those phrases, really, when someone says them to us when we are upset? I know that for myself being told to calm down when I'm upset is absolutely maddening. Why would I expect a child to react differently? And yet we do expect them to!  We expect children to calm down when told to do so, to act like it is "okay" when it clearly isn't, to act like innocent cherubs no matter what.

It's okay to be mad. It's okay to be anxious. It's okay to be so happy your bubbliness can be felt from the other side of the room.  

Feelings are okay.  It is okay for children to experience and express feelings.

I'll say it again – feelings are okay and it is okay for young ones to express their feelings.

What might not be okay is what is done with those feelings if they are dealt with in a destructive manner. Harming self or others is not okay. Property destruction is not okay. Bottling feelings up until they explode into something that is the lead story in the evening news is not okay.

But tell me: how are children supposed to learn how to positively and constructively deal with their big feelings if those feelings are constantly shushed/avoided?

What if instead of shunning children for experiencing and expressing their big emotions, we as a culture moved towards letting children and adolescents “feel their feels” and teach them how to channel the energy of those feelings as constructively as possible, or at the very least not to avoid those feelings? 

Mental health professionals have documented a dramatic rise in mental health diagnoses over the past several decades. After working in the mental health field for awhile now, I'm utterly convinced this rise is due in part to the fact that society at large tries to have people quiet their big emotions rather than processing through those emotions and figuring out how to channel the energy from them in a healthy, constructive way.

To return to this morning; I bristle at "that woman" who glared at my boy, but I don't know her story either. I don't know where she's been, what her morning looked like, or what choices she had to make before lunch. Perhaps she was glaring at life and not specifically at my boy. She was in that place of sickness, healing, and death...just like us. Chances are she is either ailing or is somehow attached to someone else who knows the names of medicines that are difficult to pronounce.

And here was a child being disruptive and making her day louder. Experiencing big feels.

Now, I'm not one to encourage disruptive behavior. But I also know that all behavior is communication. My son was trying desperately to communicate how very much he needed some kind of control in a world where he received a cancer diagnosis at the innocent age of 2 and was flung into a world of pokes, prods, and people in scrubs who “like me even though they have to do uncomfortable things to me.”

How about when we see a child losing it in public, we look for what their behavior is communicating?  Instead of glaring and judging, let's try on compassion, empathy, and a helping attitude. There may be nothing that we can do for one another in some of those moments (a stranger talking to Bug would make him more nervous/dysregulated), but we can change how we respond to one another and the looks on our faces. Let's make this a place where being “big” emotionally in public is okay precisely because there might be someone around who can help, or at the very least someone who is able to be empathetic. Let's be a village for each other rather than insisting we all live on our own emotional islands.

I saw that glare. And so did the other adults around us for whom those glares are now a little more okay. So did the children present who are learning how to respond to those in their environment who disrupt their day. 

So this is my attempt at taking my frustration at the situation and the societal problem it illustrates and turning that frustrated energy into something constructive.  Maybe you'll be a little more sympathetic and empathetic to children and their families when those children are losing it in public.  After all, "losing it" isn't fun.  "Those kids" are communicating; they are not "having fun" (usually).

And by the way, Bug's day got a lot better.  And I didn't slap that woman.  We both won.

Feb 10, 2015

Jadzia's birth story :)

Hey everyone!  Yeah, it's been forever since I've posted, but it has been a it of a hectic few months including a move, job change, Drexel's leukemia care, and preparing for Jadzia's birth.

That said, our little miss is finally here!  And I do mean finally because she went past her "guess date" by two days.  I tell ya, few things have ever been more patience reducing for me then watching her guess date come and go and still having little ankles pushing under my ribs.  :P

Let's start with her name: Jadzia Junia.  Jadzia is an archaic Polish name that is the feminine form of the word "warrior".  My prayer is that she's a warrior for love and peace.  However, we got the name from a Star Trek series called "Deep Space Nine".  There's a rather epic character named Jadzia Dax, and we really liked the name.  Junia is the name of a woman who is referenced in the New Testament as being a leader in the early Christian church.  However, in certain translations (such as the NIV, bah humbug), her name was translated as a MAN's name because OHEMGEE Heaven forbid that a WOMAN be in leadership in the early church!  That might mean it is okay for women to lead in the current church!  There are a lot of politics that go into each translation of the Bible....but that is a topic for another day.

But on to her birth!!!!!!

Jadzia Junia Romness
Born 2/2/2015
8 pounds, 21.5 inches long

Throughout the last few months of my pregnancy with Junia, I earned the dubious title of "constant contractor" from the midwives at Woodwinds, where Baby J was delivered.  Well, I was indeed contracting constantly (4-5 contractions for 2-3 hours fairly regularly, with lots of intermittent contractions just thrown in there for fun).  These were Braxton-Hicks, but some of them still smarted and they never really led anywhere.  I couldn't use contractions as indicators that labor had started.  The midwives said I'd have to go with "contractions plus": contractions plus another indicator of some kind (bloody show, much pain, water breaking, etc).

Well, I started timing contractions during the afternoon of Feb 1 because at about 3pm, they started to come closer together (about 10 per hour) and stayed that way for about 4 hours.  We called the midwives, who said it could be nothing but it could be baby.  I sure was hoping for the latter!  We got all excited (well, Dahmon was terrified but he was doing really well) and Dahmon packed our bag.  Drexel was super confused and then got really upset when we told him that he couldn't come with us.  Nana and Papa, Dahmon's parents, took care of him while we were gone.  He saw all of us buzzing around getting ready and kept asking what was going on, if he could go with us, why couldn't he go with us, etc.  We did our best to address each of his questions, but at one point he looked up at me and wailed "I don't understand because I'm little!"  Poor guy - whenever he has to go to the doctor, uncomfortable things happen to him (lab draws, chemo, etc) and he didn't quite understand that a baby was going to be coming home with us.

Anyways, we drove to Woodwinds and I was set up in a very comfortable room, hooked up to monitors, and waited a couple of hours to see what would happen.  At midnight they sent us home.  "Labor" had not progressed.  The contractions lessened in intensity and became farther apart.  "Labor" kind of just stopped.

The midwife said it was "false labor".  I was peeved and dubbed Jadzia a tease.  She was already past her guess date...and to have "false labor"?  Ugh.  Not nice.

During the night, the contractions continued but I was able to sleep...for the most part.  Contractions woke me up a couple of times but I just went right back to sleep.  I had a midwife appointment scheduled for Monday morning, so we figured we'd just head up to Woodwinds then and see what they said.  Dahmon came with "just in case".  I'm glad he did!

At the appointment, I was checked again to see if anything had progressed.  At midnight the previous evening I had been dilated 2 cm.  By the time of the appointment (9am), I was dilated to 5-6 cm and the contractions, which had started up again as we were heading to the appointment, were starting to really hurt.  The midwife said we probably had some time and told us to go get something to eat, walk around at the local mall, and then come back when it felt like things were progressing.

Dahmon and I plunked our tired selves down at a local restaurant, where I did a pretty good job convincing the waitress that I was going to birth this child right there in the booth.  Contractions that required concentration were coming every 5ish minutes.  Now, I'd tried to use the HypnoBabies curriculum in order to prepare for the birth.  I have two friends who have used it and swear they didn't feel any pain, just pressure.  I went through the curriculum, but with everything going on at the end of the year with Drexel's care, I didn't practice the self-hypnosis near as much as I should have.  Consequently, the HypnoBabies techniques that I had learned didn't really come in handy.  Not the curriculum's fault.  I just didn't practice the way I should have.  It also doesn't help that I'm inherently suspicious of hypnosis even if I'm doing it to myself.

Anyhow, partway through a very yummy omelet, I began to feel as though barfing was a thing that might happen.  We bundled up, paid, and left in kind of a hurry.  Dahmon asked if I needed to walk around a bit.  My response?  "We better get back to the hospital."

The hospital was only a couple of minutes away.  Dahmon dropped me off at the ER entrance and went to park the car.  I went inside (no way was I waiting for him out in the cold!) and heard the lady behind the front desk radio up that "we need maternity down here RIGHT NOW!"  Well, I was kind of doubled over with a contraction.  Someone came to get me and I insisted on waiting for Dahmon.  They insisted that I get upstairs.  They won.  Dahmon was right behind me and made it upstairs only a minute after I got there.

After filling out the registration paperwork, which was thankfully just a couple of questions, we were ushered back to the rooms where deliveries happen.  I was able to make it to the room, but barely.  Those pesky contractions were coming fairly quickly and were very strong.  Dahmon called our friend Maggie and said that she had better get to the hospital.  You see, we'd asked Maggie to operate the camcorder to capture our daughter's birth.  I heard Dahmon say something like "There's no rush, you probably have some time."  Then Bridgett, the midwife on duty, showed up.  After assessing me, she instructed the nurse to get the water birth tub ready right now.  She said that we might not even make it to the tub.

WHAT?!  We were supposed to have some time!  Apparently Jadzia had other ideas.  :)

Dahmon got my music going and I labored for a bit.  Maggie showed up pretty quickly, arriving just about at the point where the contractions hurt so much that I was crying.  Bridgett showed me a rocking trick with my hips to help things progress and we all headed over to the water birthing room.  Little Miss was in a bit of a hurry, so Bridgett guided us through a shortcut by the staff desks so we could get there ASAP.

Holy cow, that water tub was magic!  It was still filling when I got in because we were trying to make sure that we could actually do a water birth.  Bridgett issued me strict instructions to follow her orders exactly, keep my butt under the water, and get ready for my baby!  I was so relieved that the water was nice and warm that I heard her instructions, but I was kind of distracted by getting a person out of me.  :P  That warm water was wonderful - everything relaxed once I was sitting down, everything felt so much better, it was amazing...and then about 10 minutes later the contractions got so close together they didn't let up.  At one point I pushed on the edge of the tub and caused a leak.  Apparently I had pushed on a door and broken a seal...oops.

At that point I'd only been in labor for about 3 hours and even Bridgett was surprised at how fast Jadzia was coming.  Cue the screaming!  Loudly.  With each contraction.  Loudly.  :P  Maggie told me later she was surprised at how loud I was, but that also that my screaming wasn't high-pitched-being-killed-in-a-horror-movie screaming, but rather the kind of sound one might make in battle: low, guttural, and powerful.  Well, Bridgett let me scream through a couple of contractions, then told me to hold that energy and "direct it to my baby".  The nurse asked if I was feeling like I needed to push.  Um, yeah....and I had been doing some pushing but they were right - most of my energy was going out in noise.

The next time a contraction hit, I held my breath and focused on pushing this little person out.  There was a pop that was my water breaking.  A pause, and then the next contraction hit.  It felt like Jadzia just might tear me to kingdom come and everything was either in pain, on fire, or both....but then her head birthed, quickly followed by the rest of her.  Bridgett lifted her out of the water and placed her instantly on my chest, where they left her as they rubbed her skin down to get some circulation going.  Jadzia was super purple.  I know babies are born like that, but I'm always surprised at just how purple they really are!

Woodwinds is awesome.  I'd made it super clear that I wanted everything as natural as possible, and they followed my every stipulation.  No drugs of any kind.  Jadzia was placed on me skin-to-skin instantly.  Her cord wasn't cut until it stopped pulsating, and then Dahmon was the one who did the honors.  She wasn't bathed until the next day.  The only time she was separated from me was when they took her the next day to do her newborn assessments: hearing, blood smear, blah blah blah.

Back to the birth day - after Jadzia had pinked up a bit, it was time to move to a bed because they don't do the delivery of the placenta in the birthing tub.  When I was standing up to get out of the tub, Bridgett warned all of us that since there hadn't been any bleeding in the tub, it was likely there'd be a gush of blood once I was standing.  Thank God she warned us.  Not to be gross or anything, but the amount of blood I saw pooling upon standing would have freaked me out had Bridget not said something.  As it was I hemorrhaged for quite a while after Jadzia was born and lost a lot of blood.  Every few minutes Bridgett would push and shove on my lower abdomen to get the blood/clots out (holy poo, that hurt).  Okay, so birthing can be gross.  :P  She also said that a hemorrhage like that can happen when a baby either takes forever to be born or when it comes out like a little rocket.  Well, Jadzia was a little rocket - I was only in labor for 3.25 hours!

Damage report (c'mon, I admitted earlier her name came from Star Trek, I had to get another Trekkie thing in here): I didn't tear at all.  No drugs of any kind until they gave me ibuprofen afterwards.  Jadzia had a horrible newborn rash that took a few days to clear up.  All 8lbs, 6oz of her right now are as healthy as can be. She eats and sleeps like a champ, doesn't spit up or cry very much, refuses to sleep in her crib (good thing we're used to co-sleeping), and has this awesome habit of projectile pooping.  Seriously, that's a thing.

Everything seems much easier this time around since this is our second child.  We're kind of used to the routine of caring for an infant.  What is new is having to figure out sibling rivalry stuff that has already shown up in Drexel's behavior.  He loves his baby sister; he just gets extremely jealous sometimes.  :)

Right now my guys are asleep.  Jadzia is curled up sleeping on my chest.  And I'm typing.  Well, no more!  G'night!

Sep 2, 2014

How are you doing?

People ask innocently, meaning well.  Expecting a minute or two update or just to hear "fine, how are you?"

They have no idea how loaded that question is.

When a friend asked how I was doing a few weeks ago, she hugged me fiercely when my reply was "Do you want the polite response or the real response?"  I left tears on her shoulder.  Damn tears.  Those pesky things always seem to be on the edge of forming whenever anyone looks like they might, perhaps, be willing to truly listen.

Our little family is always receiving kind cards, messages, and such from people who are just letting us know they are thinking/praying for us and Drexel as we struggle with Drexel's leukemia.  No one has any idea how much that means to me.

Drexel is in a fight for his life.  This is the stark, terrifying truth.  Yes, his prognosis says 95% chance of total cure....but I'm terrified of that void 5% the doctors try to avoid when I ask about it.  Drexel is my son.  While three years ago I had just found out I was expecting and was all sorts of terrified/excited/nervous, now I couldn't imagine my life without this too-smart-for-his-age (seriously - this kid acts/thinks/interacts like a four-year-old), kind, energetic, vivacious young child who adds all manners of sparkles to my life.  What am I supposed to do if he is part of the 5%?  Doctors tell me not to focus on the 5%. Dahmon tells me not to focus on the 5%.  My new therapist has told me not to focus on the 5%.  I can't help it.  I'm Mom.

I'm watching my too young son expanding his vocabulary with technical terms for medical procedures, medicines, tools of the medical world, etc.  He has no idea that what he is going through is not typical for a two-year-old because the only children he sees on a regular basis are other children in the hospital who also have various sorts of tubes hanging off them like some kind of evil, mocking vines.  We can't allow him to be around too many other children because there are too many germs floating around them for his nonexistent immune system.

There was a farmer tending his field when he heard a commotion.  Looking up, he saw a rabbit zipping through his field in a frantic race for its life with a hungry fox hot on its tail.  Calling out to the rabbit, the farmer yelled "You gonna make it?"  
The rabbit replied (because of course all rabbits can talk), "I got to!!"

People keep telling me how strong I am.  These are kind words meant well...but strong?  The last thing I feel right now is strength.  When Dahmon has to physically restrain a sobbing Rex because I have to snake a nasal feeding tube down his nose since he puked it out yet again (oh yeah, I know how to put in a nasal feeding tube now), the last thing I feel is strength.  I just want to throw the tube away and sob with him.  When Rex is so out of it from coming out of anesthesia from yet another procedure that he is furiously thrashing about for an hour, the last thing felt is strength.  When he screams at the sight of a procedure room....strength?

I can fake it.  Fake the smiles and "it will be okays" and "I know, honey, we just have to get this done" for Drexel's sake.  But on the inside I vascillate between rage and sobbing.  Rage that my son, or anyone's son or daughter, has to endure this shit.  Sobbing that Momma can't make it better.  That what will make it better is allowing the doctors to pump my son full of chemotherapy poisonous chemicals when we've spent his whole life trying to keep chemicals out of him.

It isn't fair.  My parents used to say that "life isn't fair, get used to it."  But this is such a more terrifying kind of unfair than my brother getting a bigger piece of cake.

Strong?  Heck no.  I feel like a little girl who just wants to hide from everything, but Drexel needs his Momma to be strong.  So I fake it.  And I carefully word everything I put online so the cracks don't show...too much.  And I hold the tears at bay lest they take over - especially if Rex is around.  He just wants to make it all better if he sees Momma crying...he doesn't understand why there are still tears after all of his hugs and kisses (after all, when he has an "ouch" Momma's hugs and kisses make it better).

And I write.  How are you doing?  Do you really want to know?  Do you really want to know that I feel more broken, helpless, and desperate right now than ever before in my entire life?  That now I completely understand why it is not uncommon for parents of children with cancer to be diagnosed with PTSD following their child's treatment?  That I'm tired, so tired?  That the sight of healthy toddlers makes me want to sob because that should be Rex?  

But don't mind me.  This is just one of my overwhelmed days when putting my thoughts on-screen helps me to cope.  Writing helps.  Being real with people helps.  And so does sleep. It's almost midnight, I should go to bed.  Let's see if I sleep.

Jun 29, 2014

Steroidosaurus Rex

Steroids must be brewed in the pits of Sheol.

Since his diagnosis on June 2, Drexel has twice daily received a dosage of the bane of all of our current existences: dexamethosone.

"Dexamethosone" is now a word I may add to my midnight-toe-stubbing vocabulary.  That and "leukemia" /grumblegrumblegrumble

Drexel can't help it, but essentially this steroid means he acts like a completely different child.  Ever heard the term "roid rage"?  Apply it to a 3 foot tall, 28 pound, 2-year-old boy and you've got Rex over the past few weeks.  He rages, throws things, kicks, hits, shoves food so quickly into his mouth you'd think it were a living thing trying to escape, is incredibly demanding, wants food NAOOOOOOOWW, can't sleep (twice he has gone 36 hours with little more than a couple of naps), etc etc etc.

This is not how Drexel normally behaves.

I thank God above that this is not my child's norm, especially considering I've worked with children for whom this is the norm.  And I've seen the look on their parent's faces that I'm sure has been on my face these past few weeks: resignation reeking of desperation.  After a time, it is just one more time being screeched at.  One more time moving across the room to avoid chubby little hands that are looking to thump someone as an outlet for the extreme, uncontrollable frustration resulting from chemicals affecting the brain.  One more time internally screaming "I don't know what to do!" as Steroidosaurus Rex shows up like some kind of tiny drug induced form of The Hulk.  One more time trying desperately not to break down when Rex asks "do you still love me?" after a rage fit.

Drexel scares himself right now.  I can see it when he loses control, especially when he's going on 30+ hours of no sleep and is crying because he is so, so tired but "just can't sleep right now".  His emotions are so big, and so scary right now that he'll start to get angry about something and then scare himself because he doesn't know what to do with all of the anger, or frustration, or impatience, or whatever is causing excessive volume and/or tears at that exact moment.  He is only two.

I've worked with kids who behave like this daily due to psychological reasons, and have been pulling every tool out of my toolbox to work with him as if he were one of my clients.  The problem is that he is not one of my clients.  He is my son, and I know him when he is not on this *BLEEP* drug.

We have hope in this situation that comes with a date: July 3.  That is the last dose of dexamethosone Drexel needs to take...at least during this round of chemotherapy.  We've been trying to get the doctors to tell us if there is a chance he'll go back on it in the future, but they are very careful to not give us too many details about what his next rounds of chemo/treatment will look like.  It all hinges on the results of his bone marrow biopsy on the 3rd, as that will tell us how he has been responding to the first round, which will determine the next leg of treatment.

So for now, we assure him constantly he is loved completely and totally no matter what.  We remain as consistent as possible in response to negative behavior, and reinforce the daylights out of behavior that we want to see (just because he feels like s*** does not mean he is allowed to hit us).  We hold and cuddle him as much as possible (he really doesn't want to be touched right now), and walk endless paces up and down the hospital hallways when all he really wants is to keep moving.  We feed him as much popcorn and apple juice as he wants, and patiently wait out the rage attacks.  We join the chorus of endless prayers going up for our boy.  We remind ourselves that we only have to wait until the 3rd until this drug is no longer a part of his daily life, and pray for those families who deal with behaviors such as this on a daily basis with no end in sight.  And we wonder how many boxes of earplugs we'll need until the 3rd.  :P

Jun 24, 2014

Thank you!

After developing a fever and severe pains following a blood transfusion last week, Drexel was admitted to and spent the last week in the hospital yet again. Poor thing.  He absolutely hates it here, though it is obvious that he is feeling better now than when we brought him in - he is ornery again.  : )

Anyways, I wanted to take a few minutes to say thank you.  We were not expecting to be walking the journey of childhood cancer with our precious little boy.  Our plans for this summer included Drexel going fishing at his grandparent's cabin "up north", possibly going to Alaska to visit my family, fully settling into our new role in Lake City, etc.  They did not include hospital visits, possibly being trained to do IV infusions on Drexel at home, chemotheraphy, etc.

Our plans also did not anticipate being completely and totally blown away by the amazing amount of support that we have received as we've begun this awful journey.  It is an awful one, I'm not going to pretend that we are somehow appreciative of Drexel's cancer.  No child should ever have cancer.  What we are appreciative of is how many people have sent us notes of encouragement, prayed over our little family, checked in to see what we need, provided financial help/gas cards, and such.  People from every network in our lives (work, school, friends, etc) have pulled around us in support.  I have been blown away, and thank God every. single. day. for the amazing group who has been with us on this journey.

What amazes me personally is that 10 years ago the fingers on both hands could have counted the number of people I actually knew who have stood with us in some way during Drexel's ordeal.  Since I moved out of Alaska in 2005, I've met an amazing collection of friends, professors, colleagues, church family members, and many, many others who've made footprints on my life in one way or another.  I've even got family members that I didn't even know existed whom I've gotten to know and adore since moving to MN who have pulled around us in an amazing way.  What I'm trying very uneloquently (it's been a long week) to say is that 95% of the people who have supported us are people we've met in the past 10 years.  I simply didn't know many people before then because of growing up in such a secluded spot in Alaska.

Anyways, thank you.  Thank you for all of your support no matter what form it has taken.

Words are meager things.  They don't do justice to how incredibly grateful we are for the many ways in which you have made this awful journey just a little less awful.  THANK YOU.

I'd write cards to you all, but that would take too many stamps.  :P

Jun 12, 2014

Praises in the storm


It has been ten days since Drexel's diagnosis of B-type acute lymphoblastic leukemia.  

While Drexel was in the hospital, two songs were playing on repeat in my head.  One of them was "He's my Son" by Mark Schultz.  This was actually a song inspired by Schultz seeing a couple struggle with their son's leukemia diagnosis.  I especially relate with the lyrics about "let him grow old, live life without this fear..."  Drexel may have the most treatable form of leukemia, but I will not breathe easy until we receive word he is cancer cell free.

The other one was "Praise You in the Storm" by Casting Crowns.  Now, if you've been part of a contemporary worship service at church recently, you may have come across this song already.  The lyrics go a little something like this...
"I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away


I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

[Chorus x2]"

I prayed/cried/sang this song over Drexel as they wheeled him into the room to anesthetize him in preparation for four procedures last Thursday (spinal tap, port-a-cath installation, PICC line removal, cast removal).

As I thought and thought about this song - seriously, the darn thing would not leave my head (I actually found out later that it was also stuck in the head of a good friend of mine who was praying over Rex) - I kept thinking this: do I mean it when I say that I trust God?  Do I trust God enough to relinquish whatever imagined control I have over this entire crappy situation and fully place Drexel in His divine hands?  Do I trust what I tell other people in similar situations: God is present in the midst of the pain, God cares, God grieves, God is a big entity who can handle our anger?

Seriously, I'm angry.  I'm angry that any child has cancer.  I'm angry that my little boy has been so traumatized by the past 10 days of doctors and treatment that he will not leave the spot under my armpit where he stays firmly snuggled.  I'm angry that he has a port-a-cath installed in his torso to make chemo administration easier.  I'm angry that he has cancer.  I'm angry that although there is a 95% cure rate for the type of cancer that he has, words like cancer, chemo, treatment, hospitalization, remission, etc are a part of the vocabulary which now surrounds him.  I'm angry that my precious child is having part of his childhood essentially stolen by a vicious, cruel cancer that does not care that he is a mere child.  I'm angry that we have to allow the doctors to pump him full of chemicals that will not only kill the cancer cells, but will also kill good cells...and especially after I've spent his entire life trying to protect him from exposure to chemicals (seriously, I made his baby food from organic vegetables grown in the garden at Dahmon's parent's farm so he wouldn't be exposed to preservatives in canned baby food, I keep him as far from food dyes as I can...).  I'm angry that within a month's time he'll likely lose the hair that just grew in.  I'm angry that we face the possibility of him not being able to fully engage in preschool  because he will still be in treatment.  I'm just plain angry. 

There have been people who have told me "this is all part of God's plan."  Bull****.  Now, you have to understand that through my studies of the Bible and theological thinking since the time of Christ, I've come to an understanding of God that flies in the face of "everything is a part of God's plan for his glory" theology.  C'mon - are you really going to sit there and tell me that children are starving to death in every country in the world because God planned for them to starve to fulfill some sadistic part of his perfect master plan?  Bull****.  Are you really going to tell me that my precious boy has a cancer literally eating away the marrow of his bones because God wants to prove some sort of point?  Bull****.  

What the Bible shows time and time again is that LIFE HAPPENS.  We like to say "man makes plans, God changes them" but this is inaccurate.  This, along with the idea that everything is part of God's plan, is born from our innate discomfort at things being random.  "Time and chance happen to them all" (Ecclesiastes 9:11).  The sun rises and rain falls on the righteous and unrighteous alike (Matthew 5:45).  LIFE HAPPENS.  Chaos happens.  When chaos happens, God grieves (Jesus cried at news of his friend Lazarus' death (John 11:35)).  Unfortunately, children are not spared from chaos or the storms of life.  They should be, but they are not.  

We don't like that chaos happens. Heck, I don't like that chaos happens.  Ask Dahmon (my husband).  I order things.  Constantly.  I clean, organize, and order to minimize as much chaos in my environment as possible.  Chaos makes me uncomfortable.  The idea that God allows chaos to happen makes me uncomfortable, especially since this time it touched my son in a cancerous way.  But human beings hate chaos so much that when it happens, we try to explain it by saying it is part of some divine plan, trying to find some sort of divine sense in the midst of a situation that does not make sense. 

Guess what - sometimes life does not make sense.  Sometimes chaos happens and God grieves alongside hurting families.  I don't know why one child will see a completely miraculous healing while another child dies from his or her ailment.  I don't know what caused the initial cell in Drexel's body to divide improperly in the first place.  

What I do know is "neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord" (Romans 8:38-39).  

In the midst of this storm, in the midst of my anger, I intentionally sought reasons to praise God.  I had to be intentional - praise was not coming as easily as it normally does (I was once accused of being too optimistic because I said brown is a fine color since it is the color of dirt that helps plants grow).  Anger was, and is, coming easily....not praise.  Yet in the midst of this storm, Dahmon and I have found many reasons to praise:

  • Drexel has B-cell acute lymphoblastic leukemia.  Now, I'm not saying that his cancer is a reason to praise.  I'm saying that the type of cancer he has is a reason to praise because it is one of the most treatable childhood cancers out there.  It is the most common childhood cancer, and as such researchers know tons and tons about it.  It has a 95% cure rate....praise God, hallelujah!  I recognize that means there is a 5% non-cure rate, but I choose to focus on the 95%.  
  • The support we have had from family and friends has been incredible.  People from every network in our lives have come out of the woodwork to offer words of encouragement, hope, healing, and prayer.  Past professors, classmates, co-workers, parishioners, friends, etc have offered tons of help with cleaning, providing food, providing things for Drexel, financial help, etc.  People brought us food in the hospital, gave us things to keep Drexel occupied during his long days of hospitalization, sent cards with encouraging words, etc.  It has been amazing to see how people have drawn around our precious boy to support him, and us, through this process.
  • So far he has been responding well to treatment.  He has not experienced negative reactions to the chemo (minus the expected constipation, drowsiness, and absolute complete irritated attitude that results from the steroid he is on) that threaten his life.  
  • Some of his leukemia symptoms are already decreasing even after only a few treatments.  His petechia is going away, as are his excessive sheet-and-pajama-soaking sweats.  His color is also a bit better, and he has been able to maintain a stable red blood cell count for at least a few days without needing a transfusion. 
  • We live in a place where he has access to the best medical care available for his condition.
  • His medical care is being 100% covered by insurance. 
  • We have an employment situation that completely understood our sudden absence from work last week, and is flexible enough to allow us to work and care for our son in a way that is best for every member of our family without fear of losing our jobs.  
  • Drexel is so young right now that the trauma from these past few weeks will not be consciously remembered.  Sure, he'll remember later treatments...but not this past week of hell (though remnants may linger in his subconscious memory).
  • He'll be done with treatment before entering kindergarten.
  • I have a background working with port-a-caths and medication administration from working in a group home for a year and a half, so many of Drexel's new medical cares are not completely foreign to me.  For example, I surprised a nurse by being able to talk about the process of applying EMLA numbing cream to Drexel's port site before they have to access it.

This list could be longer, and I'm sure that I'll talk more about various things as his treatment progresses.  I'm angry, furious, at and with God right now, yet I know that He is grieving over Drexel just as much as Dahmon and I am.  I know the God of the universe is holding my precious son in His hands.  I am not lying by saying there were times when I was lying beside Drexel in that hospital bed when I could feel the cloud of prayer and presence of God surrounding him and our little family.  God was present in that hospital, He will be present throughout treatment, and He will be present when Drexel beats this thing.

I will praise God in this storm despite my anger at the unfairness of it all.  God is a big God - He can take it.  In fact, there was one time last week when I was begging God not to be angry at me for being so angry at him and about this situation.  I could almost hear a divine chuckle and the response, "Oh dear one, I'm not angry at you for a natural response to a crappy situation.  What matters is how you deal with that anger and what you let it do to you."  

Honesty.  I choose to deal with this anger honestly.  I will not lie to myself about what I'm feeling, nor will I ever lie to you.  Nor will I lie to God.  I can't exactly hide my anger at him from him in sugary words that don't mean much.  He knows I'm upset.  He also knows that I refuse to let this anger consume me.  It will run its course and may linger for awhile.  Whenever I see my precious son cry in fear when someone wearing scrubs enter the room, my anger will rile.  It will rile with every ounce of chemical injected into his tiny veins.  It will rile with each reminder of the innocence Drexel is prematurely losing through this process.  It will rile, but it will not rule.  

Jun 10, 2014

I will praise you in this storm.....

This has been quite an interesting month.

On May 23, we found out we are expecting our second child (due date January 23).  Yay!  We'd been trying for awhile.  Drexel was awfully cute when we told him he was going to be a big brother.  His response: "I don't wanna be a big bruvver yet!" and then "I don't want a little bruvver or sister!"  I don't think he knows what those words mean.  He is absolutely insistent that "the baby in Momma's belly is a boy."  He won't even entertain the thought that it might be a girl.  "NOOOOOOOO, it's a boy!"  :)  I guess we'll see in a few months.

On May 29, Dahmon was officially licensed as a local pastor, well on his way towards ordination as an elder within the Methodist church.  He has worked really hard for this, and I am so so so proud of him for pressing into the call that God has placed on his life.  Congrats, babe!

Not Drexel - but a picture of what petechia can look like
On June 2, our world flipped upside down.  I brought Drexel to the doctor for a checkup because he had little pinkish dots on his skin that were not healing.  They kind of looked like dots that I'll get on my shoulder when I carry a bag that is too heavy...but they were not healing.  I knew they were broken blood vessels just beneath the surface of his skin (so popped capillaries), but also knew they should have been healing.  Oh, and every day I saw more of them on his skin...especially on his left leg.

When I brought him in, the doctor asked about his right leg (it had been in a cast for almost three weeks at that point due to a fracture in his femur), recent symptoms of lethargy, and then asked if he was always "that pale".  Now, I see my son every day minus random trips.  I hadn't noticed that he was super pale, because he must have gradually become so.  I looked hard at him after she asked that question, and realized that he was a lot more pale than usual.  She immediately said that she was worried about leukemia and ordered a blood test.

Well, he hated that, but it was the first of many pokes to come in the following week.  While we waited for the results to come back, I texted Dahmon to let him know what was going on. He dropped everything and came over to be with us at the doctor's office.  The doc came back and confirmed the horrible news: they had found leukemia cancer cells in Drexel's blood, his red blood cell count was excruciatingly low, and we needed to bring him to the hospital immediately.

Stunned.  We were absolutely stunned.  Then the doctor began to walk down the list of symptoms: lethargy (check), paleness (check), petechia (check), excessive sweating (check - we thought he was sweating a lot because the weather had warmed up), lack of appetite (check), slow healing (check - they say that his leg likely fractured because of the leukemia), etc etc etc.  He had been displaying many of these symptom for the past couple of months, but we had attributed it to his fractured femur - it makes sense to be tired and such when one is healing a bone.

Anyways, we hustled home with Dahmon's mom (thank God for that wonderful woman), threw together a couple of bags, laid out the wet laundry that was in the washer so it would dry (I don't run the dryer when we are gone - too much of a fire hazard), and brought Drexel to St. Mary's Mayo Hospital in Rochester.

The next week is a blur of tests, waiting, and "nuggling" (snuggling) Drexel while they took lab draws, gave him medicine, took his vitals, etc.  The first day they told us his red blood cell count was 5 where it should have been 14 (1/2 of what it should have been) and his platelets were at a level that was 1/10 of normal.  Dr. Rodriguez said that adults with those counts are on the floor passed out.

They had to poke him a few times that first day to get lab draws and install an IV to administer fluids and transfusions.  He had a total of three blood transfusions and two platelet transfusions while we were there.  I tell you this - seeing someone else's blood drip into my son gave me a whole new appreciation for donating blood.  I asked if I could give blood to him, and they said that I can't because 1) I'm pregnant, 2) I'm A+ and he's A- (negatives can donate to positives, but not the other way around), and 3) they don't take transfusions from family members right away because if those family members are a match for marrow if that is necessary later, the little's one's body is more likely to reject the marrow if the little one has been exposed to that person's blood already.

They've got this new J-tip thing to help numb an area for little ones to install an IV.  It reminded Dahmon and I of a hypospray from Star Trek, because it essentially uses air to force the numbing junk into the little one's skin.  Drexel HATED it.  Essentially, when it is triggered there is a big blast of air.  Drexel looked at me and said "Momma, that scared me, that scared me, that scared me....."  Then they couldn't even use the site where they'd administered the J-tip because they couldn't find a viable vein, so they had to poke him elsewhere anyways.  The next day they put in a PICC line to administer stuff and draw labs.

Tuesday they did a bone marrow biopsy to determine exactly what Drexel has.  He is officially diagnosed with B-type lymphoblastic leukemia.  It is one of the most common childhood cancers, has a 95% cure rate, has a treatment course that includes chemo....lots and lots of chemo, and should not impact his adult life provided it is knocked out during treatment.

Thursday was a hard day.  They sedated him to take off his cast, do a lumbar puncture to check for cancer in his spine (none - thank GOD!), install a Port-A-Cath to make draws and chemo administration easier, and remove the PICC line.  Oh, and he got his first round of chemo directly in his spine because apparently this type of cancer likes to hide there.  He had a hard time coming out of the anesthesia, but I can't blame him.  He is only two - he has no concept of WTH is happening when he wakes up under weird machines that are beeping and he feels funny.  When they were putting him under he was super scared, so a doc gave him something "to take the edge off".  Oh boy it sure did that!  Holy cow.  My child went from a crying mess to a goofy, loopy kiddo who was absolutely fascinated by the PICC line coming out of his arm.  I'm 100% sure it was a narcotic, but I wish they could have kept him on that the whole time

Sunday we got to go home.  Rex perked up so much once we got home.  He really hated it in the hospital.  First of all, he's not terribly fond of places he doesn't know.  Second, nearly every time someone came into the room it meant he was going to be poked, his vital signs taken (which he didn't typically appreciate), or something else was going to happen that he didn't like.  At one point, he heard the door starting to open and he grabbed a sheet, threw it over his head, and started yelling "hide!  Hide!  Hide!"  He was always saying "I want them to go out" and "Momma, nuggle me, nuggle me!!" or "what are they going to do to me, Momma?"  He was so scared the entire time.  I am extremely grateful he is young enough that these are not memories that should stay with him consciously long-term.

So yeah, he is facing three years minimum of chemo.  He's already had several doses and seems to be responding fairly well.  The goal of this first month is to knock his cancer into remission so his healthy bone marrow can rebuild.  Then he will still be on chemo, but it will be less frequent (now it is weekly).  He is getting better about taking his medicine orally.  All I have to do is tell him that I'm going to have to pin him if he doesn't take it, and he'll glare at me but he knows that I'm serious.  He hates it, but he needs his meds.  Unfortunately, the steroid that he is on means that he has an extremely short temper and is extraordinarily pissy most of the time.  Luckily he's only on that one for a month.

It has been simply overwhelming and amazing to see the support that we have received through this entire ordeal. Friends and family from all over the place have sent us tons of encouraging messages.  At one point I went through one of the things that people were "liking" on Facebook, and thought about how we knew each of these people: school (classmates and professors), my acting/modeling, church, random people we met and befriended, work, etc.  Our church put together a care package for Rex that made me cry - we've only been there for a few months, but they showered us in love and support.  Most importantly, there was a cloud of prayer over my precious boy.  I'm not exaggerating in the least when I say there were times I could feel the prayers of everyone who was bringing Drexel before God.  God is the only reason any of us made it through the hell that was last week.

I've been so angry at God over this entire thing.  I know that the Bible talks about how being believers does not guarantee we are sparred the slings and arrows of the world, that the rain falls on the good and the evil alike (Matthew 5:45), that time and chance happen to them all (Ecclesiastes 9:11).  I know this, but it is just so wrong.  Children should be spared these kinds of illnesses.

We have spent Drexel's entire life trying to protect him from carcinogens that could cause cancer.  I made his baby food at home from vegetables grown in our organic garden.  We try to keep him away from refined sugar, candy, and food dye.  We don't live next to a refinery or nuclear plant.  He's slathered down in sunscreen when he is outside when it sunny.  Chaos didn't care.  The doctors said they don't know what causes this type of leukemia.  It just happens.  One cell while dividing goes haywire, and then divides into more haywire cells which eventually take over if not treated.  Despite all of our efforts to protect our son from carcinogenic elements in his environment, he still got cancer.

God did not give our son cancer.  This is not some kind of divine squishing for anything Drexel or we have done.  This is not part of some messed up, sadistic divine plan.  Life happens.  Chaos happens.  God says, "I'll be with you in the midst of the chaos."  We like to have things ordered and predictable, but that is not how life works.

I'm angry at God, but I've not given up on him.  He knows I'm upset - I've spent the better part of the past week yelling at him.  Why does one child get a miraculous healing and another doesn't?  I don't have a clue.  I was talking about this with a good friend of ours, and he said that he and his wife would pray while I yelled.  Sometimes that is the key - sometimes when we see someone in the midst of suffering, it is not our job to try and give dead platitudes that mean nothing.  Sometimes it is our job to carry their faith for a little bit and pray while they yell at God.  He's a big God, he can take it.

Besides, I can't exactly hide from God that I'm upset with him and this entire circumstance - it isn't like it is a surprise to Him.

Through this entire thing, I've had the song "Praise you in the storm" stuck in my head.  I'll write soon about the praises in this entire ordeal....but right now Drexel is shouting for me.