Tuesday, April 28, 2015

Freaky Friday

Our family has seen plenty of ups and downs along this journey.  We've sailed calm waters and fought to stay on our feet through raging winds.  Doing life these days means striving to be as 'normal' as possible while still preparing to expect the unexpected.  We know things can change in the blink of an eye, but maybe we'd forgotten.  Maybe we'd gotten a little too comfortable.  Well, we received quite the reminder a few days ago.

Friday marked the completion of Paige's first week of full school days since her diagnosis.  She was exhausted at the end of each day, of course, but the girl didn't give up.  She fought through feelings of physical illness from recent medication adjustments.  She battled nerves over the unknown--classes she had completed work for, just not yet attended.  With her usual grace, Paige handled everything beautifully.  It was definitely one of the 'ups' of our journey.

Though she was tired at the end of the week, Paige was excited to be leaving Friday evening to attend a teen camp for patients seen in various clinics at Texas Children's Hospital--oncology, cardiac, and a few others.  There would be plenty of medical staff there to attend to any emergencies, and Paige was finally at a place in her treatment where she was okay being away for a couple of nights--especially considering all the fun that was to be had.  After a quick check-in, she was ready to roll--even if Mom was having slight separation anxiety.  Paige would be okay, after all--and she really needed this time of fun and fellowship.  Another 'up.'

Younger brother Jeremy was quite excited to be "the only child for two nights" (his words).  He made the dinner selection for the evening, and I had plans for a "Mom & J" day while Boyce worked on Saturday.  We were just settling in to watch some TV Friday night when the call came.  Our weekend plans were about to change in a big way--one of those 'downs' was about to hit hard.

Paige's bus had just pulled into camp when she began experiencing numbness and tingling in her hands and feet.  Shortly thereafter, her hands cramped up as her arms pulled toward her chest in an involuntary manner.  As she tried to tell a fellow camper what was going on, she found her speech slurring and words hard to find.  The medical staff immediately went to work assessing the problem, checking vitals, and making sure she was stable.  They determined it wasn't necessary to go to the hospital close to camp--but they were bringing her back to Houston so doctors at TCH could check things out and run whatever tests needed to figure out what happened.

The nurse practitioner, a fabulous lady we know and trust completely, assured me Paige was okay to make the trip.  That she would get her to the ER safe and sound.  "Amy, she's okay.  She is okay."  I hung up the phone--I think.  I may have dropped it.  My voice shaky, my whole body trembling, I relayed the story to Boyce.  For a brief second it felt like we were transported back to the neurotoxicity reaction Paige experienced this time last year.  Except she was two hours away.

All of a sudden, I was hit with an overwhelming panic.  I couldn't breathe, couldn't stop crying--couldn't pick myself up off the floor.  Weren't we supposed to be past this?  I wasn't sure I could go back to this place again.  Boyce--and Jeremy--quickly sprung into action to get me calmed down.  I had to be back 'in the zone' when I got to Paige.  While Boyce was helping me get the breathing thing under control, Jeremy was gathering his things to take to Grandma's (can you tell he's done this before?) and grabbing Paige some clothes for the hospital.  By the time Grandpa arrived to pick up Jeremy, I had returned to my 'normal' self--if there is such a thing anymore.  I was also able to talk to Paige on the phone.  Hearing her speaking clearly and telling me she was okay (just tired) was just was the doctor ordered.

It didn't change the fact that two hours is a really long time.  I spent much of that time calling on prayer partners to lift my girl--and lift her high.  The rest of the wait was split between praying and reminding myself to breathe.  As soon as the next call came, we were out the door.

Usually I'm the one who has a bit of a lead foot.  Not that night.  Boyce was on a mission to get to his baby girl as soon as he could.  By the time we arrived at the hospital, Paige was already being moved to a room in the ER.  Labs and an MRI would be done before we even thought about going home.  Since the scan wouldn't be done until the next morning, Paige was admitted and moved to a room upstairs about 2 am.  No sooner had she fallen asleep than a team of doctors came in to conduct another neuro assessment.  My girl was not pleased, but she understood they were trying to help her.  She was back to sleep in no time.

Before Paige had a chance to eat breakfast, we were on our way down for the MRI.  It's been a while since she's had one--and though one of us is always there with her, it's still a bit nerve-wracking for her.  Paige selected a movie to watch (at TCH they use movie goggles to help the kiddos focus on something besides the loud, scary machine), and it was go time.  She held the emergency 'squeezer' in one hand and my hand in her other.  Many, many prayers later, the scan was over--and the wait for answers continued.

When doctors came to see us just a couple hours later, they said Paige's labs looked good, as did the MRI.  There was no sign of bleeding in the brain (didn't realize they might find that, so I had to move past that very quickly)--in fact, the scan seemed to show improvement since the one taken after last year's reaction.  They are thinking the episode was a reaction to one of her medications--one she has taken for more than a year without incident.  It's actually very rare to experience a reaction to this particular medication, as there is only one documented case.  Totally a Paige thing--always wanting to be different.

As of now, we just keep on keeping on.  If it happens again, something will have to change.  We are praying it's just a fluke.  We have a follow-up with Neurology in a couple of weeks, and an EEG will be scheduled in the near future.  Gotta make sure those brain waves are doing what they're supposed to.

All in all, Paige is doing well.  She's tired--and still pretty freaked out, as you might expect.  She also went right back to school yesterday without missing a beat.  Pretty marvelous Monday, I'd say.  There's one of those 'ups' again.

Friday may have been one of those terrible, horrible, no-good, very bad days--but that's when we have to remind ourselves that God is good all the time.  He never leaves His people.  He gives us strength when we have none.  Peace and hope when we are wrecked with anxiety and fear.  Though the situation this weekend was wrought with the unknown, our family remained united in strength.  United in hope.  United in faith that God was still working that amazing healing thing He does so very well.

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