Julia Update

I figured we were due for an update on where things stand on the health front.

Julia's antibiotic for her UTI kicked in after about 3 days.  In the meantime she spent some time resting, relaxing, and healing. 

I waited a week to call back for her urine cultures because the office was closed for the holiday weekend.  When I was able to get through I was given the run around about what her actual results were.  The nurse kept telling me her antibiotic was sufficient, but would not tell me what had grown.  I gave her Julia's history and she said she'd talk to the doctor and get right back to me.  She did, but still would not tell me what grew in her urine. I don't understand.  We need to know what the cause is, so we can take action to prevent it in the future.  When you only have one kidney, you can't risk infections.

I continued to feel frustrated.  It also really concerns me that she had such visible blood in her urine.  For Wilms' tumor patients that is often a sign of relapse.  Our pediatrician did not even feel her abdomen.  He saw no need to talk to urology or oncology, but his answer to all my questions was, "I don't know."  (If any of you cancer-survivor parents out there have advice for getting the best pediatric/primary care post-treatment, I would love to hear it.  This has been a tough one for us lately.) The more Billy and I talked about it, we just couldn't let it go.  I called her urologist to let them know about the UTI and called oncology to let them know what was happening.  Both nurses were very concerned, took excellent notes, talked to the doctors, called peds, and got results and called me back in less than an hour.  Dr. McLean was very concerned about relapse and wanted to know asap what her culture had grown.  Fortunately, it was gram neg rods- pointing to ecoli.  That makes sense in her case because of the constant stool in her pullups, diapers.  It is definitely the answer we wanted.

Dr. Hodges called me personally later in the day to discuss her current urological status.  We talked about the struggles with her bowel retraining.  Given all of her history he strongly believes this is being caused from the full abdomen radiation treatments she received.  Side effects and complications.  The pages and pages of them that they gave us from all her drugs and treatments.  It's almost like a game of roulette.  You know you have to land somewhere, what will it be?  He was very helpful with an action plan for assisting her.  The daily miralax has helped with consistency, but she lacks the ability to empty her bowels.  She has been eating like a horse for weeks and has recently started to eat very little- another sign that she is impacted. So for now he wants her on stimulant laxatives and miralax.

Our kitchen counter now houses all the pediatric laxative products available on the market, appetizing, I know :) This has become our daily mission.  Fortunately, they seem to be effective and I am happy to report that Pampers are up to the challenge.  She does not seem to be too uncomfortable in the process.  She also has a really high pain threshold, so for all I know she's just tough as nails.  But we knew that already.  She seems to be sufficiently empty for now, so we can back off some.  She goes back to see GI on Monday, so they will get a chance to weigh in.  Dr. Hodges also wants her in Aveeno baths twice daily, bottom dried with a low hair dryer, and fully coated with zinc oxide.  Take that ecoli! If this becomes a lingering issue, she will go back on prophylactic bactrim until we get on top of her bowel situation again.    

So overall, things are good.  The "scanxiety" is definitely there.  We know it never goes away, but it doesn't make it seem any more normal.  We were talking about fear last night in our women's Bible study and reacting to feeling in our circumstances.  I truly believe we are not made to live in fear and God's perfect love casts out fear when we walk in faith and belief.  However, that in no way means we will not feel fearful, from time to time.  And some of us more than others.  Someone was sharing about a family history of suicide.  When that is your reality and you see evidence of it in someone you love, you will definitely feel fear.  That is the same for us.  Fearing your healthy child may get cancer, could be considered an irrational fear.  Fearing your cancer-survivor child may relapse with their cancer or a secondary cancer is very real in our world.  It is our reality.  These are the outcomes for childhood cancer survivors...

It is our sobering reality.  There is fear in the world of pediatric cancer.  We do not live in it, but we definitely feel it now and then.  The reassurance from our faith comes that God can take away our fear and replace it with HOPE.  Which He so faithfully does for us, when we give our feelings to Him.  We have full trust that whatever happens will be a part of God's perfect plan and will be used for His glory.  But it does not change the fact that we will bear witness to and experience suffering, sometimes beyond comprehension.

We have to change these statistics for our children.  These numbers are a disgrace.  Or current 40 year old protocols are not adequate and are (as the evidence shows) doing lifelong damage.  The outcomes for adult cancers are a completely different story because of research.  The price our children are paying to simply live is a travesty.  One 19yr old survivor commented when this graph was first posted that she wished her parents hadn't fought so hard when she was 3 because the side effects she is forced to live with now are just too much.  Heartbreaking.