The Words We Never Wanted to Hear

(**NOTE: If you are local, please do not share this with your children.  We are not talking to our kids about any of it until their is definitive news to share.  And we do not want them to hear it secondhand from another adult or child.)

Today was Scan Day.

Our day started bright and early.  Early, is usually good though, since Julia can't eat anything before her ultrasound and she figures that out really quickly.  Carter was excited to be spending the day at Daddy's office and packed his backpack as soon as he woke up... PSP, a tank, a blackhawk, a flashlight, Unusual Jets of the Cold War DVD... a normal workday.  He was ready.

Julia and I had a sweet time of worship on the drive to Brenner's.  We have been listening to Psalty CDs lately.  I loved Psalty as a kid and am so eager to see them fall in love with the songs, too.  It still amazes me how deep some of these songs can be and how much spiritual truth is in the simplest words.  Today we were rocking out to "If I Were a Butterfly".  And they say texting while driving is dangerous, have you tried doing an alligator with your arms?! Anyway, the chorus really hit me...

And He gave me a heart 

And he gave me a smile, 

He gave me Jesus 

And He made me His child.

It just sums up so well, that God has fully equipped us for this life to bring Him glory.  When we have those four things we should count ourselves abundantly blessed and prepared for anything.  Psalty, you rock! 

I had some quiet moments to pray on the way in was happy the day was finally here.  As I scooped her up and carried her in she wrapped her arms around my neck and laughed.  It made me weepy to think where we were heading.

We started in radiology at 9am for her chest x-rays and abdominal ultrasound.  They came out pretty quickly to get her.  She is such an old pro at this.  She walks right back with the tech herself, hops up on her stool in front of the machine, and takes a deep breath with her arms out.  

We finished in a few minutes and she told us to head upstairs.  I asked about her ultrasound and she said to wait in the lobby until they were ready.  After about 20 min, one of the receptionists asked us why we were waiting.  I told her and she said they did not have an ultrasound scheduled.  Interesting, since it's been scheduled for 3 months and you guys called to confirm the tests last week.  We decided to go upstairs and talk to them instead.  

Nurse Nancy met us in the back and I told her what had happened.  She was on the phone in seconds.  They denied having her on the schedule and said they couldn't do it today.  She was fired up by then.  She is such a gentle, sweet soul and probably doesn't even weigh 100lbs, but when she means business, look out.  She fought with them for a while to no avail.  To make a really long story short, Brenner's recently switched to and ancillary scheduling service.  What? I know, weird.  So now, when the 9th floor wants to schedule something with the 7th floor, they have to call someone in a totally different building-- and for all we know different city.  (Sounds like the banking and IT world.)  Makes no sense to me.  So when they transferred from the old system to this, they moved hundreds of appointments and some got lost. How nice.  

Nurse Tammy took us back to check Julia in.  She has grown so much since we started treatment.  They love to see the gains and the curls bring a smile to everyone's face.  Smiles are priceless in the clinic.  There were so many babies in treatment this time.  It was actually hard to maneuver in the waiting room because of all the infants in their walkers cruising around.  It still breaks my heart to know cancer is limited to just kids, babies are victims, too.

 Julia was excited to see Ms. Betsy and pulled up a chair at the art table.  They made bling-covered sunglasses and inside the lenses they drew a picture of where they wish they could be.  For Julia, it was the beach.  I am so happy we are going soon!

 They called us back to a room and one of the new med students started her physical.  She really did a wonderful job and spent a lot of time discussing all of Julia's recent issues.  

I forgot just how much has happened in the past 3 months- 3 bouts of stomach flu, heat exhaustion, dehydration, 2 colds, a UTI, and her lingering bowel incontinence.  She left to brief Dr. McLean and the social worker came in to say hi.  She kindly offered Julia some ice chips and apple juice- the breakfast of champions for NPO kids :)  You would have thought it was an ice cream sundae, Julia was so thrilled.

Then Dr. McLean came in to talk and do Julia's physical.  In case I haven't said it in a while, I love this man.  He is so patient, kind, humble, thorough, intelligent, and a great listener.  He said Julia looked great overall and they were happy to see her healing and getting her general health back.  We talked about her bowel issues.  He said they don't see it very often at all.  Usually the opposite is the problem and he didn't have a lot of advice to offer.  He was really intrigued and  wants to do more research.  He said Dr. Hodges assessment sounded right and is hopeful that function will return in the future.  Besides the resident, he also had a molecular research phD student with him.  They spent some time going over Julia's case, treatment, and what they look for in follow up.  They like to bring them in to put faces and cases in their minds before they head back to the lab to do research for new treatments.  I think that is a really impressive idea and was happy to be a part.  Dr. McLean is very passionate about St. Baldrick's and pediatric cancer research and does everything he can as a doctor to push it forward.

As we sat and talked we had a chance to discuss our recent pediatrician frustrations.  He had some good advice and agrees we need to be up front with them and find out who in the practice is able to handle her case.  He was very supportive of being proactive and advocating for the best care.  We reviewed all her labs from Monday and for the first time since before cancer 15 months ago, her counts all look good.  There are a few small fluctuations, but overall everything looks great.  Her white blood count has finally rebounded into the normal range.  It took 9 months, but she has made it to the low normals.  Yay!  He gave me copies of everything and we were getting ready to go when he brought up her chest x-ray and pulled out copies of the report and x-ray.  Dr. McLean is a strong advocate for records access and always gives us copies of everything for ourselves and lets us see anything in her computer records we want to see.

He handed me the sheet and said, "There are 3 small spots on her lungs."

 

Time stood still for a moment and I lost feeling in my arms.  It took everything in me to listen to him speak.  Fortunately, he notices and slows down as he talks.  He pointed to three tiny white spots on the x-ray.  He circled them because as he says, "Only the expert eyes downstairs can see everything they need to see in these."  At this point the spots are 3.5mm which is very small.  Two of them were seen in the April scan, but it was not pointed out to us until they appeared again today.  So what does all this mean? Conclusively, not a lot.  The spots are so small that they do not warrant further invasive intervention unless they grow.  So there are no easy answers.  He reassured us that it did not mean definitive relapse and we need to just wait and see.

Now it was back to the ultrasound issue.  Dr. McLean and Nurse Nancy decided we needed to do this today.  Julia has been fasting now for over 19 hours and we don't want to have to do this again.  So they decided we should just camp out downstairs until they could take us.  They finally took us back just before 2pm.  Poor Julia was so hungry.  I finally offered her a lollipop just so she had something.  Our favorite ultrasound tech, Calista, was out and the two girls left were totally slammed.  They said they were two days behind just on the inpatient kids.  Apparently the ancillary schedule is not working well so far.  She finished and we waited for the initial review to tell us we could go.  

She got a "clear" and we headed to the cafeteria.  We will call up to the floor tomorrow when the complete report comes in.  She was so happy to finally eat.  She has some of the craziest food preferences, but at least it was food...

 So the rest of the day has been spent processing all of this new information.  This is one of those conversations I've rehearsed in my head many times and now I've heard the words said aloud.  It still hits me anew every time I hear myself say the words.  It is a very slippery slope to let your mind go there with all of this.  We can't get ahead of where we are today.   It is true in our daily lives, but especially in these situations, God's grace for today is like a shelter in the middle of a raging storm.  Every time we try and walk out ahead of ourselves we are pummeled from all sides.  We do not feel peace again until we stand in the shelter of today.  I confess I have stood in the rain a handful of times tonight alone, with the same result every time.

It has been a glaring reminder of how we create this bubble of expectation and illusion of control. Even in the cancer world, we get comfortable when we think we can predict our own futures.  But we can't, no one can.  In one of the first conversations after we received the news I said to a friend, "It looks like that lesson in abiding and trusting in faith is not short term, but for life." We have to continually be willing to lay it all down before God daily.  When fear and anxiety rise to the surface, we have to take it back to the only place where we can exchange it for peace.  This is going to be a true test of faith for the next 3 months.  October 14th seems like SO far away.

So for now we pray and trust.  We want them to be just scar tissue or to disappear.  The radiologist said the bottom one could potentially be the end of a vessel.  We have to wait and see.  When Wilms' tumor/nephroblastoma relapses it usually shows up in the "tumor bed" where the kidney was removed, in the opposite kidney, or in the lungs.  Julia's original CT, at diagnosis, did not show any spots in her lungs.  The difficulty here is that we don't have regular CTs because of the dangerous radiation.  We are also looking into her body more than you would a normal person so you are going to see things that wouldn't have otherwise ever been seen.  With knowledge sometimes comes confusion.  Every time I look at her I keep telling myself, she is the same today as she was yesterday and so is God.  For now that has to be enough.

When we got back in the car to go home today, Psalty started to play again.  The song, Father I Adore You, came on and Julia said, "Mommy, this is the song you sing to me at night when I'm scared."  God knew what my heart was beginning to feel.  And it was my precious 4 year old who eased that fear and pointed my eyes in the right direction.  Thank you.