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.

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