Friday, February 1, 2013

Clinic News

We are finally home after a LONG day at clinic.  I am really not sure how we did that long drive weekly last year, but thankfully Pops was our chauffer today and it was a lovely day.  We saw lots of old friends from clinic and David made a few new friends.  I hate pulling up to that big hospital, but once we are inside and see all the wonderful staff and friends, it feels like coming home to family.

As soon as we got there Nurse Mary Jane rocked the lab draw and within five minutes of our arrival labs and urine sample were done.  Those are usually the most traumatic events, so we always breathe a sigh of relief when they are over. 

Margie the nurse practicioner looked David over.  His blood pressure, weight and height were all great.  He has grown almost an inch in two months (woot woot!) and his weight is hovering right around 60 pounds.  We go back in three weeks for his February scan.  I mentioned to Margie that I worry about his kidney (renal function) as much as I worry about relapse.  She then reassured me that if he ever goes into renal failure there are options such as dialysis and kidney transplant and that renal failure is not fatal.

In some ways that is so reassuring because after all that he has been through we just want him to live and have a happy life.  All cancer parents want is for their children to see adulthood.  I breathed a sigh of relief when she explained that renal failure is the worst that can happen to his kidney and it is not fatal.  Then on the other hand I know how hard that surgery was to remove his kidney so I can only imagine how difficult a transplant would be and then I cannot imagine being tied down to dialysis three times/week. 

This is where our faith steps in and says "no matter what it is well."  God has so had his hand on David throughout this journey and David is receiving care from an amazing facility with some pretty amazing professionals.  All is truly well.

Dr. Belyea sent us to lunch (David's favorite of Cici's Pizz) while we waited for lab work to return.  He did not want us to leave the area until that Creatinine level was back.  David ate like a little piggy and then I called clinic and heard that his Creatinine was .9:(  That is not a level that excites us, but we know that it is going to go up and down some and with his last bout of bronchitis two weeks ago that makes sense.  All his other labs were great, so once again we just keep putting one foot in front of the other walking in faith.

Today the amazing Ms. Meghan (educational coordinator for oncology patients) met with us to check in with David about school and to visit.  She then provided me a brochure for Camp Holiday Trails in Charlottesville.  It is a special camp for kids that have chronic special medical needs.  I know to you reading this blog this will seems weird, but it kind of hit me hard that David is now considered to have special life-long medical issues because of his solo kidney.  Between his cancer/kidney issues/Down Syndrome God must have a big plan for our sweet Rock Star.

On a fun note, David did get to be videoed for the Dance Marathon video that is coming up on February 23.  David got to be in the video last year and we even attended the dance marathon at UVA and despite his low hemoglobin last year we had a ball!  We hope to be able to attend this year and David very willingly participated in the taping of the video.  He was instructed to pretend to be fighting because the song this year is called "The Fighter."  He also had to say "My name is David Robinson and I am a fighter."  Of course that was a tender moment because all these amazing kids in clinic are fighters and I am so proud that my boy is one of them.

Sorry for the long dissertation, but today was overall good.  We had hoped for a lower Creatinine, but as David's doctor reminded me today that this is a marathon not a sprint and his level is going to fluctuate.  I am thankful to Pops who drove us today, thankful for the amazing staff that takes such good care of our boy, and I am thankful to God for his faithfulness to us today and always. 

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