Clinic Day

Sorry it's taken me so long to update.  Thursday we were back at the hospital for Julia's monthly clinic appointment.  We've come a long way from the trips in sleeveless dresses.  It is bitterly cold here, like the rest of the country.  Only somehow we haven't had snow! It seems like a waste of cold air.  How can it be in the teens and not snow!

Anyway, Julia was okay with going.  She whimpered about putting cream on her port, but knew we had to do it.  She was excited to be going to see Ms. Karen.

Julia has been much more likely to wear her hairbows lately.  When she was bald it seems people were more careful about calling her a boy or girl.  But now with the short hair she is called a boy constantly.  No amount of bows, dresses, pink, or skirts convinces people.  It breaks my heart to see her so upset.  I wish I could hang a big sign over her head or something. 

She had fun playing trains and blocks and was excited when Ms. Karen peeked in to call her back.

 

Her port flush went well.  She was a trooper and it flushed with no trouble at all.  They drew her labs, but we haven't gotten the results yet.

Then Nurse Diane came in for her physical.  It was so great to see her.  She hasn't done her exam since October.  She was so cute when she came in cheering that it was her turn.  There's a baby in the clinic and Julia that they compete over seeing and today she got Julia :) All these doctors and nurses are so near and dear to us.  Everyone was pleased with how well Julia is healing.  She has been healthy and out of the hospital for two months now.  She has gained 6lbs since her surgery and diagnosis.  Her hair is coming back and her color has improved tremendously.

They still don't have any real answers to her bowel issues.  They can be chemo side effects or side effects of her abdominal radiation.  There is no way to really know and nothing that can really be done about either one.  We will continue with the meds and they told us to try other OTC products to find a remedy that works for her in hopes of slowly weaning her off of it all.

They also discussed her port.  They feel comfortable taking it out as long as her scans on January 28th are clear.  The reasoning being she has now been without chemo drugs for three months, so if any anaplasia cells/tumors remain they would be growing in this time.  At this point the risks of the port outweigh the benefits (ie. line infections) They are trying to get her an appointment with Dr. Pranikoff on the same day as her scans.  Once he has seen her and done her preop exam, she can have surgery any Friday for the next 4 weeks. So if everything looks good on her scans the port could potentially be removed on February 12th.

 

Before we finished Ms. Diane mentioned potty training.  Julia was trained a year ago before all this happened but has been in diapers since she was diagnosed.  They want her to work on getting out of them.  She asked Julia if she was ready for big girl underwear again.  Her reply, "No." Aren't you tired of diapers? "No." What kind of underwear do you want to wear? "I don't."  Alrighty then.  So wish us luck this week.  It will be a work in progress since she seems to have little control of her bowels lately and is going 6-8 times a day without realizing.  Should be fun for all.  We tried it for an hour tonight and she went to the bathroom and peed 4 times in an hour.  This may take a while...