Friday, July 12, 2013

Ever Crawl Out of a Cave?

How I'm feeling, these days, is like I'm crawling out of a cave.  I feel like I've been hibernating, in a dark, chilly, mossy place, and I'm just beginning to get confident enough to sneak my face into the sunshine and test the air outside.  But this is in no way a romantic or even a pleasant image; I'm still patchy with dirt, and my hair's a mess.

Really, I hope that this upswing continues.  Because, you know.  It's been hard.

Lately...things have been SO MUCH better.  Things have been freaking fantastic, compared to February of this year.  Compared to March of this year.  Compared to April and May.  Things have been great.  But I'm still a little flinchy and nervy and afraid of the big wide world.

Gage is doing awesome.  He's fit and healthy, and he left the hospital at 42 pounds and quickly ate his way to 50, where he has remained.  He's never been 50 pounds before, and it looks good on him.  He's been riding his bike and running around and climbing trees and bugging the heck out of his sisters, all things I (daringly) looked forward to when he was in the hospital.

He's been on Prednisone for four months, and will likely have three more months of it.  They started with quite a high dose, and have been slowly weaning him down.  He is on daily blood pressure medication, and after several weeks of adjustment the medicine is completely controlling his blood pressure to high-normal (down from unacceptably high).  He had four infusions of a chemotherapy drug and is now in clinical remission from the Vasculitis.  We go back to CHOP in a few days (we've been there about every two to three weeks since March) and they will start him on a new drug at that time - an oral chemo med that he will be on "indefinitely."

The next hurdle will be watching and waiting, and seeing whether remission continues once the fourth dose of chemo is out of his system (which should be any day now).

Anyway.  I can't say enough good things about CHOP.  Really, I can't.

Last month we were getting breakfast at the cafeteria (we arrived a little early for his appointment - never can judge how traffic will be driving into Philly) and I looked over to see Rebecca, the pastoral care person who came to Gage's room and sat with me so many days in March.  "Hey!" I said, pleased.  "Hi!" she returned, enveloping me in a big hug.  She looked around.  "Where's Gage?"

"Having breakfast," I said.  "Come sit with us!"  

So she did.  We ate breakfast together, me, my mom, Gage and Rebecca, and she commented on how good he looked, how healthy and what a good color.  (He was super-pale in the hospital; his bone marrow wasn't working properly to create enough blood for his body.)

I introduced Rebecca to my mom.  "Rebecca was such a comfort to me in the hospital," I said.  The memories came flooding back, me confused and angry and unhappy, with only the loosest control over myself.  Crying and urgent and sad.  Rebecca's shoulder had been my pillow, for many hours.  Her shirt had been my handkerchief.  "Sorry about all that," I wanted to say.  "Sorry I was a maniac."  But of course I didn't need to.  She knew, and she was happy to see us well.

"No pasta today," Rebecca observed, grinning.  Gage had been on a strict diet while inpatient, with very limited sodium and potassium.  It was hard to feed him something he'd eat within the restrictions (he wasn't at all hungry then) and he had plain oiled pasta...frequently.

After breakfast, on our way up to the oncology clinic (where the doctors would assure me once again about his *other* issue, the mass in his liver, that "We get all the bumps and lumps that no one can identify.  We're almost positive that it's not cancer.") we waited for an elevator with Kate, the art therapist that had visited Gage at least four times during our stay, for at least a half hour each time.  It was the same all over again.  "Hey!"  "Oh my God!  Hi!  Gage looks great!"  

And again with the memories.  Gage carefully painting a wooden box before decorating it with plastic jewels, a gift for his sisters.  Gage drawing a picture of himself, complete with hospital pajamas, while I leaned over to take a few markers for myself.  Kate the Art Therapist subtly moved the markers closer to me.  She also pushed a stack of line drawings across the table, and, without looking into my eyes, murmured, "These pictures are popular with parents."  

I almost laughed, almost said, "But I'm not the one you need to provide art therapy to!"  But then one of the pictures caught my eye and, without saying a word, I slid it over and began to color.

"Sorry about all that," I wanted to say.  But Kate knew.  She got it.

The doctor we saw in oncology was the same one who had seen us while Gage was inpatient.  (Of course she was, because that's the kind of day I was having.)  And, seeing her, more memories surfaced.  She was so patient with me, when no one could say what the liver mass was, when we were all anxious to try to identify it.  I remember showed her an image on my laptop, and saying, "Granted, I am not a radiologist.  But have you considered this?"  She smiled, not at all mockingly, but maybe a little sympathetically.  "Yes," she said, patient and kind.  "We've considered that."  "Okay," I slowly closed my laptop.  "Okay," I said again.  "I'll, maybe...stop looking."  "It's okay," she said.

Now we were seeing her again, months later.  "You look better!" she said to Gage.  "You look better too!" she said to me.

Sorry I was a maniac.

Gage's main doctor now, the nephrologist (kidney doctor) who correctly diagnosed Gage's auto-immune disease and performed the kidney biopsy, I'll refer to as Dr. C.  He's amazing, and I love him.  I have a kind of crush on him.  But the first time I met him, the first time I really met him, I had a sort of a breakdown.  

In the beginning of Gage's hospital stay we saw so many doctors, nurses and residents that it was completely impossible to remember everyone (we had multiple teams of doctors, including general pediatrics, nephrology, oncology, gastro-intestinal, infectious diseases and who knows what else).  So I'm sure that I met Dr. C. before I remember meeting him.  But once they started to narrow down Gage's condition we saw far fewer doctors, until we settled on just the ones who were right to deal with exactly what was going on.

The day I really met Dr. C. was a Bad Day.  I was just waking up, as was Gage.  The attending general pediatrician had just come into the room to introduce himself for the first time.  I was confused and sleepy and sitting awkwardly in my pajamas on the couch-turned-bed.  Dr. C. came in and said, "I think we know what it is, we need to do a kidney biopsy."  I remember looking up, sitting on that couch with my bedsheets crumpled and feeling completely inappropriate having not yet even brushed my teeth, and there were two doctors, two residents, and Gage's current nurse all standing in a half-circle, looking at me.  I started to cry.

Rachel, Gage's nurse on that day, watched me, her eyes widening.  Barely a moment lapsed before she took a step forward, lifting her arms and ushering everyone out of the room.  "Can you all come back in about an hour?" she asked, her voice strong and confident.  "This isn't a good time for us."

"Okay," the doctors agreed.  And they left.

Rachel called another nurse into the room and asked that she entertain Gage for a while.  "Come on," she took my arm.  "We're going to get a cup of coffee."

Rachel took me to a lounge and pressed a hot cup into my hand.  I sat on the couch and cried for a few minutes, and she sat with me and allowed it, even encouraged it.  Then she said, "You're doing amazing."

"I'm a mess," I said.

"No, you're doing awesome.  I don't even know how you're keeping it together.  This is a really scary situation, and you're doing awesome.  In front of him, where it matters, you're doing amazing."

"It's just--" I stumbled over my words.  "It's so hard.  And then there are kids here, I see kids here who are so sick.  Kids who are really, really sick, and I feel like I should just be able to handle this--"

"No, none of that," she cut me off.  "This is your kid."

Dr. C. came back later, and talked to me again about the kidney biopsy.  And I expected him to treat me as though I was delicate...I thought he would tiptoe and be quick and be wary of my tenuous emotional state.

But instead, he invited me in to watch the biopsy.  I immediately agreed, and when I later learned that not many doctors were willing to have parents in to watch biopsies I knew that he was taking a chance on me, and I started to kind of love him.

And last month, when we were there for Gage's appointments, Dr. C. came into the office, said, "What's up, Gage?" and sat down heavily in a chair next to my mom, slumping a little to get comfortable.  And he smiled into my son's eyes and he said, "How's summer been treating you?"

Sorry about all that, Dr. C.

Things are starting to normalize.  We're so far from where we were.

The sun is shining and I'm stretching my joints, testing the air and shaking the stiffness out of my body. I feel ready to come out of hiding.  My kid...he's okay.  Nobody's perfect...we all have issues.  He's well, today, and I am accepting a new normal.  Yes, he'll have this forever.  Yes, we'll always have to monitor him, and he will probably have future hospital stays because of his disease.  But right now (right now) he's laughing on the couch with his Dad, and he's strong and smiling and hungry, and I'll take it.

I'll blink, hesitant of the bright, bright light, but I'll move forward with confidence.

I'll take it.

Sunday, April 14, 2013

Following Up

We went for Gage's first follow-up appointment at CHOP.  It was much harder than I thought it would be.  Wait, let me re-phrase.  The appointment went great, but the whole being there was tough...very tough.

I've only driven myself to CHOP twice so far.  (I barely left the hospital when we were there for two weeks, necessarily.)  The first time I got hopelessly lost in Center City Philly, and before you ask...YES, I have GPS.  Yes, I do.  But it was no help at all.  It would tell me to turn, and then say 'recalculating,' and then tell me to turn again, and then say 'recalculating.'  We were stuck in some sort of twisted cycle of abuse, me and the GPS lady.  I was following her commands, but it was never enough.  It was never enough.

This past week I went armed with very specific directions to avoid getting lost again.  But what I didn't count on was my power steering failing.  Oh, that happened.  It happened majorly.  My biceps will never be the same.  The power steering kept going in and out - sometimes I could outsmart it by keying the car off and then on again - sometimes this worked.  And sometimes it didn't.  But sometimes I had power steering.  And sometimes I didn't.  The whole way there, and the whole way home.  (We have since gotten this fixed.)

By the time I got to CHOP (and parked sans power steering, which involved a lot of sweat and cursing), I was already breathing a little hard.  And then we walked in, and my heart caught in my throat.  Because this....  I spent two weeks trying to get back to normal life, but this....  Seeing the hospital again....

I hated knowing my way around.  I HATED it.  I wanted the place to be a maze.  I wanted to have to ask for directions.  It was all too familiar.

And Gage...he's doing so well, he's doing so awesome.  But he's not himself.  He's on high-dose steroids, and this robs him of his true personality to a not-minor degree.  He is impulsive, and he is wildly energetic, and he is hungry.  So very hungry.  He is doing amazing, with everything, but he is not himself.  We checked into the doctor's office, and we didn't wait long before they saw us.

"Gage!" the doctor smiled, high-fiving him.  "It's so nice to see you out of the hospital!"

I knew what he meant, but I wanted to correct him: "Actually, we're in the hospital."

I imagined him staring at me, his smile growing slightly vacant.  "That's where we are right now," I would point out.  "We're in the hospital."  Because, you know, you can tell.  Don't believe me?  Look around you.

Instead, wisely, I think, I nodded mutely.

The check-up was so fast, faster than I'd dared hope.  They gave us instructions to go upstairs for bloodwork, and said they'd see us in two weeks.

"So, after the bloodwork," I said, "We can leave?"

"Yes," the resident and the doctor said, smiling.  "That's all we need."

"So after that.  We can just...go?"

I get a text from a friend asking about a double-date.  What do you call it when it's a double-date of families?  Two couples, and five kids, amongst you?  An outing?

Can't that day, I write back.  Gage has chemo.

Wait, what?



Tonight I sent a request for a room at the Ronald McDonald House in Philly.  His appointment next week...we're supposed to be there at eight in the morning.  I cannot fathom how to get from here to there (keep in mind my past two past two drives...have been nightmarish ones) by eight.

So I'm handling this.  I'm sending the online request form, and I've filled out all of the information, and I'm reflecting on how glad I am that I have always contributed to this particular charity, ever since I was young.

When I was maybe 13 I used to go with a friend to a hospital in Delaware.  My friend had a spinal condition that necessitated regular visits to a specialist in a hospital, and she sometimes asked me to come with.  I never wondered at my parents' immediate allowance, although in retrospect it was somewhat out of character for them to say "Yes, you may skip school to go with your friend to the doctor."  I never remember them hesitating for a second, which, now that I think about it, was really very cool of them.  Over a few years I spent several overnights with this friend and her mom and her little sister at the Ronald McDonald House near her hospital.

I have fond memories of those overnights, feeling special and cared for and entertained.  As soon as I started working I made it a point to contribute to Ronald McDonald House Charities, and continue to do so to this day.  So, of course, I think of them when I can't figure out how I am going to make it to Philly by 8:00 AM (with all of my faculties intact).

But when I go to actually fill out the form online....

My heart starts up again, and my throat tightens.

Because this is my kid.  And I'm not seeing this through the eyes of a young teenager, who has the everyday perspective to know that shit happens, and friends weather storms, and they make it through to the other side.

I see this from the perspective that this is my kid.

My kid is not okay.

And that....  That.  Is really, really scary.

Tuesday, April 9, 2013

Gage's Hospital Stay

We've been home for almost two weeks now, and I feel finally able to write the details of our recent health scare.  I'm sure this will get long, so here's the executive summary:  Gage was in the hospital for a month.  It took the doctors three weeks to find out what was wrong with him.  He has an auto-immune disease and is on several medications and will need significant follow-up to make sure that he gets back to good health.  During the hospital stay a CT scan revealed a mass in his liver.  It is probable, although not certain, that the mass is benign; likely a hemangioma (often called a 'strawberry mark' when a child has one that's visible - they can occur anywhere in or on the body).

Now, the long.  Gage started a fever in the middle of February, on a Saturday.  It was going up to the high 103s.  Monday morning I took him to the doctor and he got a positive result on a rapid strep test (which surprised me, since he hadn't complained about a sore throat at all).  We were prescribed Amoxicillin.  His fever didn't go down at all...I mean, it would go down, but it kept coming back up again.  It was spiking the high 103s twice a day, like clockwork (between 1-4 in the afternoon, and around midnight).  After he'd been on the Amox for 48 hours I called the pediatrician and said that I thought he needed something stronger.  They said to give it a few more days.  I was treating the fever with Tylenol and Advil - alternating - and the medicine would only bring the fever down a degree or so, until the fever faded a few hours later.  In between fevers he seemed almost normal, just tired.

From Feb 16th to the 28th I talked to the ped. several times and had him seen twice.  They said that if he still had the fever by the 28th they would send him for bloodwork.  Wednesday night, the 27th, he forgot to flush the toilet and I saw that his urine was dark in color.  I immediately thought that he was dehydrated (he'd had the fever for almost two weeks now) and started really pushing Gatorade.  On the 28th we went for the bloodwork, but in the afternoon his urine was darker than the night before, and he'd had PLENTY to drink.  He was also very lethargic, just not himself at all.

I felt something change in my heart, and I knew that I had to take him to the hospital.  I didn't want to wait for the bloodwork to come back - I needed him seen.  Honestly, I thought that they'd give him a bag of fluid and a stronger antibiotic and send him on his way.

I called the pediatrician and she recommended that we take him to Lehigh Valley Hospital - Cedar Crest, which has a pediatric wing.  She called the ER to tell them to expect us, and we got there around 5:00.  His initial bloodwork came back that he had high white cell counts - indicating infection or inflammation - and his electrolyte levels were perfectly fine - he was not dehydrated.  They admitted him, and by the time we got to the room it was 1:00 AM, so there'd be nothing more done that night.

They spent all day Friday and Saturday running tests, and nothing was coming back positive except that he had the high infection/inflammation markers and he had blood and protein in his urine, and his blood pressure was high.  Saturday night they did a CT scan and found the mass in his liver.  The size of the mass has been debated a little - apparently the borders of the mass are not clearly identifiable, and the readings have put it between 4.3 and 6.6 cm across.  Not tiny.

No one knew what the mass was - all they could say with certainty was that it was 'atypical.'  The best guess was that it was an abscess - a pocket full of infection.  It would explain the fever and the high white counts in his bloodwork.  It did not explain the blood in his urine, which was still happening, and getting worse, but the doctors thought that his kidney function might be a kind of separate issue.  They started treating him with broad-spectrum antibiotics through his IV.  They said that the abscess would either need to be removed (major surgery) or biopsied or drained (both risky).  They first wanted to shrink it with the abx.

They put in a PICC line (a long-term IV).  He'd already been through four IVs at that point - his veins kept blowing or clotting.  We received a few diagnoses about the kidney issues, all of which were later proved to be false (thank goodness, because they were really scary!).

For the two days that followed Gage seemed to improve.  His fevers went down a little (although not away) and his white count went down a little, indicating that the infection/inflammation was going away.  Everyone was pleased.  But on the third day he got worse again.  The doctors changed the abx to give the infection a new attack, but Gage didn't get any better this time, he continued to get worse.  Now his hemoglobin was dangerously low - he wasn't making enough blood on his own and was very anemic and pale.  He had a transfusion.

After two weeks at Lehigh Valley the doctors said that we had exhausted their resources and we all agreed that a transfer to the Children's Hospital of Philadelphia (CHOP) was appropriate.  CHOP sent an ambulance up and took us to Philly.  I had a little hope that the doctors at CHOP would be able to diagnose him right away - maybe this was something that they were familiar with, and LVH hadn't come across it yet.  It was not to be.

We met many teams of doctors immediately and everyone set to work learning all they could about Gage to try to piece this puzzle together.  They started him on blood pressure medication.  The liver mass ended up being a big red herring, because it isn't connected to his illness at all; it was an incidental finding.  But everyone was trying to piece together the low kidney function with the fever with the anemia with the high blood pressure with the high white count with the liver mass.  But nothing explained all of the symptoms.  In the meantime, Gage had many medicines and countless blood draws, four ultrasounds, two MRIs and a CT scan.  He was on a low-sodium, low-potassium diet and had IV hookup 24/7.

After a week and two days at CHOP we received the preliminary diagnosis of Vasculitis, an auto-immune disease that causes inflammation of the blood vessels.  A kidney biopsy confirmed this.  Finally, we had a diagnosis and a course of treatment!

Gage was on high-dose steroids for three days in the hospital, and they kept up the blood pressure medication.  He started to improve for real this time, and everyone breathed a big sigh of relief.  They started him on a high dose of Prednisone, now that the IV steroid course was done.  Gage also needs four infusions of a chemotherapy drug which is known to help put Vasculitis into remission.  He received one such infusion before we left the hospital.

Gage has improved a lot, especially in the last few days.  His color is much better, and he has a lot of energy.  The steroids are making him VERY hungry, and he's gaining back the weight he lost during this ordeal.  His blood pressure is still on the high side, but not *too* high, and he is still taking blood pressure medication daily.  He sees the school nurse daily as well, to have his BP checked, and we bought a pediatric BP monitor for home as well.  His urine is back to normal, and his temperature is steadily normal.

We have lots of follow-up appointments at CHOP, some Vasculitis-related (Chemo infusions, which will last 6-8 hours each, check-ups to test his blood levels and adjust his medication, etc.) and some liver-mass-related (scans, check-ups).  Although the doctors are fairly certain that the liver mass is benign they are not convinced enough to leave it alone.  They want to take regular scans to make sure that it's not growing.

So that's where we are.  I'm sure I left tons of info out, but it's long enough already, LOL.  We are so happy to be home, and beyond relieved that Gage is getting better.