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

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

Praises in the storm

CAUTION: PARTS OF THIS POST ARE A BIT RAW.  :P

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

[Chorus:]
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

[Chorus]

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.  

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.