Clinic Day

Today was Julia's monthly clinic visit for port flush, physical, and labs.  As she starts to feel better each day, hospital trips are not high on her list.  She wants to visit everyone without the medical procedures.  I don't blame her, I wish it were that way too.  She started resisting when we put on the emla before we left.  She hates the way it feels and won't use her right arm once it's on.  She perked up a little once we checked in and was having fun with the trains.

It was fun to see all the Christmas trees.  They have a holiday one in the clinic, a beach one just outside it, and a circus tree in the playroom.

It was a busy day at the hospital and the clinic was completely full.  It always makes me stop for a moment when I see so many children with this horrible disease.  Every time we go we meet new faces.  And these are just a fraction of the total in our local hospital.  The war against pediatric cancer is huge.  We have so much work left to do.

Julia warmed up quickly and was entertaining the families waiting.  She had a pretend ice cream shop in the puppet theater.  She would ask people what they wanted and then proceed to tell them what she would make them instead.  It was so funny.  She was so full of herself, chatting away.  It is so refreshing to see her sweet spirit shining more often again.  We had so many days in clinic when she was feeling rotten.  This is a welcome blessing.  I love to see opportunities the kids have to brighten the lives around them with their joy.  It is such a unique gift for them to share.  And there's nothing quite like hearing somber adults laugh out loud :)

Then she was triaged and her weight has stayed the same.  All the eating she's doing now is such a change from where we were just a few weeks ago.  She had time to play in the playroom before she was called back.  Most girls would prefer the kitchen, dollhouses, and dolls- but Julia gravitates to the trains, race cars, and power tools.  She is definitely a girl of many interests.

They called her back and she barreled through the halls on the ride-on car.  She stopped to visit the fish.  She has named each one after one of her friends and can actually tell them all apart.  She was tickled to see the giant wooden giraffes wearing hats, scarves, and Christmas boxers.  Then Nurse Nancy showed her their dancing Christmas penguin- cute! She loved all the nurses' stocking hanging on the desk, just like we have at home. Then she crawled up in Ms. Karen's lap and gave her a copy of the thankful tree from Thanksgiving.  She was so touched.  I told her about Julia's comment about having her at Thanksgiving with us.  She was speechless.  We made her cry again, sorry.

Dr. Baxley did her physical today.  He said everything looked good.  She is healing like they expect her to.  He was not surprised about the continuing bowel issues form the vincristine and said to expect it to last a while longer.  So she will remain on daily miralax as needed, along with the prophylactic bactrim for six months.  So he agrees with Dr. Hodges- no re-potty training in our future.  The diapers remain- at this point she is going through a pack every 4 days, so I guess we'll continue to stock up.  (If you don't need your coupons, we'll take them.)

He said our next big step is to have the surgery to remove her port.  She has reached the point now where the risks outweigh the benefits.  They will email Dr. Pranikoff, her surgeon, to see when he can fit her in in the new year.  Once the port is out fevers become less of an emergency and she won't have potential hospital admissions.  Her next port flush and checkup will be January 7th and her next round of scans are on January 28th.

Then Ms. Karen came in to flush her port and draw labs.  Julia was not thrilled.  You could hear her whimpering from outside even before she came in.  Ever since the clot, Julia says it really hurts to be accessed.  We finally had her in position and ready.  Ms. Karen did the thorough cleaning and prep of her skin and then she started to fight back.  It was like wrangling an octopus! It still amazes me what these nurses can accomplish in the midst of flailing and with such precision.  Then she got her bandaid and was cheerfully chatting again.  She happily told everyone, "I only had 2 things today- port flush and they listened to me."  Thankfully it looks like her port flushing days are numbered. We didn't have to wait for labs today, so they will call us with them soon to let us know what her counts are now.

Then she wanted to stop at the Arts table and make a snowman garland with Ms. Betsy.  It was fun to visit with Evie and her mom.  When we left, they were anxiously awaiting labs from Evie's 3 weeks of unexplained fevers.  It is such a stress as parents that on this side of cancer sick is never just sick.  Every symptom, pain, ache, fever raises that dreaded question in your mind.  It seems so funny to pray for your child to 'just be sick'.  But that is our hope for all of them- that they can be healthy kids again who get sick from time to time.  Cancer parents find blessing in ear infections, strep throat, stomach bugs, and viruses- pediatrician problems- we like those.  We continue to pray for Evie and thank God for her complete healing.

Then we stopped by to see Vinny and his mom Sarah.  He was a day admit for an 8 hour chemo treatment today.  Please continue to lift up their family.  The growth of Vinny's chest tumor over Thanksgiving was not the news we were hoping for.  We will never stop asking God for a miracle.  Please pray for his parents, doctors, and nurses as they map out his treatment and make any potential decisions.  Pray they know God's will and feel His hand.

The kids have been happily playing all afternoon and were excited about tonight's Advent activity.  (We have a calendar for the month of December with a special activity for each day.)  Tonight was a Christmas Campout.  We put up their tent in the living room and strung it with colored lights.  Then we snuggled together for a Christmas movie and stories.  They were off to dreamland in no time...