One Year OT Scan Day

Today was Scan Day! One year off treatment.

We talked about it yesterday and Julia asked what was happening at the appointment today.  I went down the list from the top.  With each one she said, "Yay, I like that one." Until we got to the finger prick.  She is really not a fan.  I think it is one of the most dreaded by all these cancer kids.  Give them a port access any day.   It still surprises me that she accepts all of this as a part of life and actually enjoys it.  Her brother was spending the night with her best friends and enjoying a fun playdate while she was NPO and hanging out at the hospital.  But she does it joyfully and with a smile on her face.  She truly enjoys being here.  When I say Camp Brenner is part of our family, it is true.  And for Julia, she does not remember her life before this.

We started in radiology with her ultrasound. I can't help but watch these days.  The techs don't talk about it while they do it.  I'm getting quite a lesson in anatomy.  I can now identify the gall bladder, spleen, liver, common bile duct, kidney, and bladder on the screen.  Now if I could just get one of these machines in my own living room, we could ease a lot of scanxiety around here.  I know GE sells a portable one, how long until the iTouch has an app for that? We could just add it to the nightly routine- bath, pjs, teeth, books, scan your abdomen for tumor growth, prayers, kisses, sweet dreams for all :)  

She finished her ultrasound and they told us to head upstairs.  I asked about her chest x-ray and they said that was scheduled for next week.  What?!?! here we go again. Apparently the new scheduling system still doesn't work.  Back out to wait while they discuss amongst themselves.  Fortunately everyone in radiology was cheery and helpful today (and there was NO ONE else in there) and they decided they could squeeze her in. Good for everybody since we weren't leaving without one. We've had so many by this point we could probably do it ourselves.  Do you think they'll ever add a self-scan aisle like at the grocery store? It would save us all time and money :) 

Then we headed up to the clinic to check in.  Julia couldn't wait to see Ms. Betsey and got right to work on her art project for the day.  They are reorganizing the entire floor and Arts for Life now inhabits the old enclosed waiting area.  It's exciting to see them in their own space.

They called her back for vitals.  She looks good.  She actually lost a few pounds.  Her post chemo binge seems to be over.  Many young kids eat excessively for the number of months they were in treatment.  As if their little bodies are making up for lost time.  Julia was definitely following that pattern, eating around the clock.  Recently, it has tapered off to meals were she actually eats very little.  Much more typical healthy preschooler behavior.  We finished with Nurse Tammy and she wanted to head out to the art table.  One thing was standing in her way... the finger prick.  She sat in the chair, outside the lab, whimpering over and over that she doesn't want to.  I reassured her over and over that she didn't have to like it, but we still had to do it.  She didn't put up a fight, just cried while we did it.  Then after her bandaid, all was well again.

Nurse Karen came to find her to head into a room.  She hopped up on the table and started coloring.  Amazingly, being NPO didn't even phase her today.  She never asked for food or even water all morning.

We had fun catching up with Ms. Diane.  She loves these kids so much and finds a way to have fun with each of them.  She was happy with Julia's progress.  Her labs look great.  All her blood counts are back to normal now and staying there.  We talked about her GI and urology issues.  Yuck.  This part is still a mess.  We are continuing with Dr. Fortunato's plan of daily dulcolax suppositories and miralax.  We have been skipping a dose every week and unfortunately there has been no success.  We are still in status quo mode.  She talked about the future options.  There will likely be a colonoscopy.  If they find a section of the colon has stopped functioning (the general consensus right now) it would need to be ressected.  She touched on that process, the surgeries, the colostomy, etc.  ughh.  The crazy part is, the routine we are in now has started to feel normal.  I try not to think about the next steps.  We'll cross that bridge in six more weeks.
Then we moved on to the urology issues.  We have been attempting re-potty training.. round 3.  It was impossible when she was on heavy dose laxatives, but now that we are controlling the situation, we have an 8-hour window we can practice in during the day.  She has been doing quite well the past week and then two days ago she started screaming it hurts when she pees.  This happens every time, despite our many extra precautions.  Her urine looked okay in the lab report, but they sent off the cultures to be sure.  They did not have any answers, so we're heading back to Dr. Hodges (urology) for his assessment. 

While we waited for the radiology reports to come in, she headed out to chat with the fish.  She has names for all of them and can honestly tell them apart!

The report? NED!!! Julia is ONE-YEAR CANCER-FREE!!! 

Nurse Karen looked it up for us and printed out all the reports.  She did not have any noticeable spots on her lungs.  We praise God for His healing.  Her ultrasound report showed no evidence of tumor growth.  She does have some enlargement of her remaining right kidney suggesting early compensatory hypertrophy.  There is also diffuse thickening of her bladder wall.  All of these issues will be addressed when we see Dr. Hodges.  Right now we are just thankful for no evidence of masses or metastatic disease.  I must say though the "Conclusion" section makes me laugh...  "Absent left kidney compatible with prior radical left nephrectomy."  (translation... There is no left kidney because they surgically removed it.)  I could have told you that without the ultrasound!

Julia really wanted to finish her art projects (instead of getting something to eat!) She made an adorable squirrel.  You can see him standing next to her.  He has a cute purple, tie-dye colored stuffed tail :) She noticed the scrap paper was shaped like a rabbit and she and Betsey turned that into another project.

Then it was time for some lunch and we were on our way.  It was one of our fastest appointments.  The new system in the clinic seems to be working well.  Labs and paperwork were incredibly fast and we were in and out in less than two hours.  Then we headed to pick up Carter.  The dreary, rainy morning gave way to some glorious cool, fall sunshine.  Julia was eager to play with her friends.  

They set up there own pet store outside.  Julia was happy to be the puppy.  She loves to be a dog, play dogs, talk about dogs, read about dogs, draw dogs, play with her stuffed dogs, anything that doesn't involve real ones :)

We are so relieved to breathe again for the next three months.  The kids were excited to say "one-year cancer-free!" Such an incredible gift we have been given, like a free pass for the day.  It does not erase the past and it doesn't guarantee the future, but for today we will hold it up and smile in gratitude, thanking God for his mercy and grace.  The cancer journey is a lifelong marathon of smaller segments.  We have reached another mile marker and we are thrilled to be here.

So we'll head to CiCi's to toast this new gift and celebrate:)