Planning Day at Brenners'

Ya'll should be proud.

I didn't have to make a scene today at the hospital.  We headed in this morning and started with a pitstop in the oncology clinic.

I guess I need to back up a little further.

After Julia's repeat UTI incident earlier this week, the ante was raised yet again to make something happen as soon as possible.  Apparently my call to Dr. Fortunato's nurse last month for a reality check put some sort of urgent flag on Julia's chart.  When the endoscope clinic turned the page to their 2011 calendar we were one of the first people on the schedule.  Julia is slotted to be admitted to the hospital on January 10th. We also found out this procedure is way more than we anticipated.

Julia will be admitted for a week.  We begin Monday with starting all the lines- IV, cath, NG tube, etc. Then proceed to scans and tests.  They will also start a 48 hour "go lite" full system flush on her.  After an evening and morning of NPO, she will then go into the OR on Wednesday to have all the colonic monitoring lines and equipment put into place.  She will then have to lay immobilized for the next 24 hours.  If the readings are successful she will be discharged sometime in the evening on Thursday.

We had no idea this was a week long process, so that explains some of the difficulty in scheduling.  As it turns out this admission overlaps with her next oncology clinic appointment and scan day.  So pour JuJu is now going in for the full overhaul.  In an attempt to streamline the testing, minimize the trauma to Julia, and please the insurance company, we are going to try to compile everyone's wishlists into one grand plan.  Poor JuJu is getting "the works".  It will be amazing if it all comes together.

So back to today.  We started in the oncology clinic to get their list: CBC w/diff, CMP, abdominal ultrasound, chest CT,  and urinalysis.  Then we headed to the peds clinic to see Dr. Fortunato.  The poor guy.  If I had any doubt that things were as crazy as his nurse said they were, he was the poster child for her case.  I don't think he had slept, showered, or shaved in several days.  We got right down to business and he agrees this is the next step.  He was worried I would be resistant, but after almost two years of this, we are ready for action.  My one requirement was that she be put on prophylactic bactrim during this interim period.  It doesn't take a doctor to figure out that her UTIs run in 30 day cycles which would put us back in the ER roughly around Christmas Eve.  With our track record that would be right on par, but we are breaking the mold this year and wish to spend our holidays at home and not in the ER.  I think the docs and nurses are just charming and fabulous, but we have used up way more than our allotted turns.

He agreed on the bactrim, but wants Dr. Hodges (urology) to prescribe it.  He said that's not his part on the team.  I totally respect that.  He then took the list from oncology and said they would make it happen.  His nurse was on the phone with the other departments before we even got out the door. In the end it may mean she stays a little longer in the hospital, but once all the lines are in I would rather she just get everything done.  Her CTs will require IV and I'd rather she not have to repeat that a few days later.  It also makes much more insurance sense.  Once her $200 admission is paid everything is covered.  If we go back in for a CT scan, we pay $200 again.  I really appreciate that the doctors care about these things.

Once the tests are complete, Dr. Fortunato will decide which surgery she needs and it will be scheduled likely the following week.  At this point he is leaning toward a cecostomy tube (as is Dr. Hodges).  He said he hates that he has to do this to her, but he feels like we have given her body all the time and grace we can and unfortunately the problems have crossed the line.  We are feeling complete peace about everything.  I know the week in the hospital will be a doozy, but we have exhausted all our other options at this point.  Right now I am actually thankful that we have until January.  We have a full calendar of Christmas activities and fun with our friends, family, church, and hospital.  We plan to travel to PA for several weeks with the family before we come back to the hospital.  We are looking forward to a healthy and full Christmas.  Dr. Hodges nurse called back to tell us she will be on bactrim for the next year to prevent UTIs.  Now that we have covered that base, we feel much more comfortable with waiting a few more weeks.

We have started to talk with Julia about what will happen in January.  I'm trying to stick to the basics right now.  I don't want her to have to dwell on it over Christmas.  She has had a few questions and seems satisfied with the answers.  Today while we were waiting in the exam room, she was intrigued by the diagram on the wall.  We have no explored the entire digestion process and all the organs in the abdomen.  Really makes you think about eating in a whole new light.

We were thankful to be leaving after such a short visit and excited about a day full of Christmas events ahead of us.  As we walked out, we went out a door we rarely ever use.  The parking garages were so full we had to park near the roof.  As we went out the doors, admiring the helicopters on the landing pad, I turned and was surprised to see Vinny and Sarah on their way in. I love when God does that! This is the very same spot were we ran into Nicholas and his family when we were both discharged surprisingly early from sick admits!

Vinny was heading in for another day of chemo, unfortunately Sarah also had to conference with Dr. McLean today.  It was discovered last week that Vinny has relapsed on treatment again.  His lung tumor is continuing to grow and has invaded his pulmonary arteries.  I can't even bear to think that this precious friend of ours is running out of medical options.  We are so blessed for the past year he has been given.  After relapsing in November 2009, he was given 2 months to live.  But Vinny's body does not follow the rules.  Never has.  He has endured intense treatments, severe side effects and complications, and has been put on and taken off hospice, yet he continues to fight back.  God has been very good.

We were just thrilled to see them and get a chance for a real life hug.  Sarah had our new bracelets for our foundation's fundraising.  When she handed me one, Vinny said he and Julia needed one.  He asked what it said, and we told him is was the website so people could read about them and other Camp Brenner kids on their computers.  He said, "Does it say I hate cancer?"

In our eyes, "Yes, it does."  We all hate cancer.  It is the reason we will never stop fighting, never stop advocating, never stop reaching out, never stop helping, and never stop praying. 

For a split second, as Vinny and Julia scampered along the window ledge and admired the helicopters outside, you could pretend these were just carefree kids.  And then we said goodbye as they headed up for chemo and a conversation that no parent ever wants to have, we headed out for our break before the next surgery.  Please lift up Vinny and his family in prayer. We encourage you to hang a gold ribbon as part of your Christmas decorations this year.  Every time you notice it, please lift up one of the thousands of courageous cancer kids.