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. 

Clinic Tomorrow

Tonight we are staying in Radford to get a jump start on our morning appointment tomorrow for David's January clinic visit.  I wish I could say that this gets easier, but frankly the longer I am away from UVA the harder it is to go back.  Mike took David for his December visit so I personally have not been there since November.  I love seeing the staff, but pulling up to that big hospital brings back so many sad memories that it is hard to stomach.

Tomorrow should hopefully be a pretty easy day for David after we get the labs drawn.  That is never ever pleasant but he is such a forgiving trooper.  My eye is always on that Creatinine level so we covet your prayers that tomorrow it will be awesome. 

Despite the lump in my throat I am at peace.  I refuse to live in fear, so I am prayerful  and focused on God's plan for our family.  He has proven to be so present in our lives that I cling to the knowledge that whatever news we receive tomorrow or in the future is okay because God will always be faithful.

I will update tomorrow with hopefully awesome Creatinine levels and the Momma in me is excited to see his height and weight.  Wow-this rockstar is growing so much.  Just this week he outgrew another pair of jeans! Woot woot!! We are so thankful for your prayers.

For the Kids

Mike and I love being parents.  We love being involved in our kiddos activities and cheering them on in whatever they do.  I have no pictures from this past weekend because we spent most of our awake hours in a gym helping our AAU basketball team run a fundraising tournament.  We are weary and tired, but thankful for our basketball family working together to raise money for our team. 

We love our kids and whatever our kids love doing we too love.  Kyle is a basketball nut and he also loves his baseball.  David is currently playing Upward basketball but hopefully soon we can cheer him on in Special Olympics.  Hope went to her first gymnastics class last week and she LOVED it.  We do not know a ton about gymnastics, but if it is something that one of our kids loves, then we too will love it. 

Mike and I both understand that these short years of raising our kids and being involved in their interest and loves are it.  We get one shot to be active and "hands on" parents and we are giving it our all.  I desperately want our children to look back over their childhoods and remember that we were there, engaged and involved in whatever they were doing.  I want them to remember every ref I yelled at for them, every ballgame we attended. 

Mike and I are not perfect parents.  Attend one AAU tourney with us and you will see that we are sometimes one step away from a Jerry Springer show.  Mike is an intense coach that loves his players and I tend to yell loudly often at referees.  Kyle plays post and I do not like it when he gets banged up under the goal. 

We are not perfect parents, but we fiercely love our kids.  We know that these special years are short and fleeting and that one day I will miss these crazy weekends in a hot and stuffy gym.  One day I will have time to make sure my house is spotless, my car is pristine, and I am the picture of organization. 

Mike and I just get it that these short years are not about us.  These precious years are about making sure that our children are trained up right and that they know that they are so important to us that we chose to follow them in whatever game or activity they are involved in.  We want them to know that they are so precious to us that we will sweat in a gym all weekend for them, freeze in an early spring baseball game for them, and spend countless hours together riding up the interstate for their latest "game." 

We are just thankful and blessed that we have been chosen to be parents and that we have these little gifts in our lives to treasure and to encourage in all that they do.  This tired AAU Momma is off to bed:)