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:) 

Childhood Cancer

I know that both Mike and I both have shared childhood cancer facts on this blog before.  We hope that if you have read this blog for any length of time you know that childhood cancer gets a very small slice of the pie in terms of funding for research.  David's own oncologist is also a researcher so for us it is personal that he has very limited funds to work with to save children like David from deadly cancer.

Tonight I am asking you to take a moment and click on this link http://wh.gov/PkGX to sign a petition for the White House to go gold for September.  I think we all have seen the power of the pink for breast cancer awareness in October, so lets start a month early and include our children in the Gold for chidhood cancer awareness. 

I am not going to share more statistics about childhood cancer but I am going to share how cancer has impacted our lives.

Tonight our David got upset when he realized that Hope was going to gymnastics and he cried to go too.  Sadly he only has one kidney now because cancer took away one of his kidneys and adrenal glands.  He will never be able to do "high risk" activities again.  Stupid cancer

Childhood cancer made us be apart as a family for roughly 90 nights last year.  That was ninety bedtime stories I did not get to read to Hope and ninety nights I did not get to check Kyle's homework.  Stupid cancer

We are now no longer naive about the "what ifs" in this life.  We trust in God's plan for our family but we also know that there are going to be hard times here on this Earth. 

Kyle as well as Mike and I know that at any point David's cancer can return.  We know that we are always one bad scan away from being back in treatment.  We live with the knowledge that we could be thrown back into the hell of chemo and that we may lose him one day.  Again we trust in God's plan for our family but it is a burden we live with every day. 

David's body looks like a train wreck from all his scars.  Stupid cancer.

I still suffer from nightmares and have flashbacks to those first few dark days at UVA.  Stupid cancer.

So please take a moment and sign the petition.  The petition still needs roughly 5,000 signatures.  For David and all the future David's of the world that hear the words "you have cancer" please sign it.  To parents like us that live with this burden everyday and to those parents that had to kiss their angels goodbye on this side of heaven please sign it.  God Bless You.

Lessons from the Basketball Gym

Tonight I was downloading some pictures off of my iphone and I found this beautiful one of the snow.  You know the snow is gorgeous when an iphone through a window looks this good. 

This picture is the sun coming up over the mountain on the beautiful snow.  We certainly live in a beautiful part of the world.  I love it.

This is a somewhat blurry picture of Kyle's AAU hoops team after they won the fifth grade championship this past weekend.  I love the guys on both of our teams and their families are our extended family.  Travel basketball (or any sport) is a huge commitment but we are together as a family making memories.  What touches my heart is that several of the guys called David over for the team picture after they won the championship.  It made me tear up that they chose to include David. 

This weekend I was watching a sweet little third grade team with several of our friends on it play in their first game ever.  They were so cute and we were just cheering them on with every ball they threw near the goal.  It hit me that if I would have planned David's future he would have been a "mini Kyle" and would have been out on that court playing hoops. 

God however, had a different plan for our son.  Instead of being on a third grade AAU team learning how to play competitive basketball like his brother, he instead is sitting on the sidelines cheering him on.  His low IQ, slow reflexes, and low muscle tone do not allow him to be competitive with kids his age.  Then I look at his blonde baby chick hair from chemo, the scars all over his body from the hell he has endured over the last year, and I got a lump in my throat. 

I, as a parent, would  NEVER have chosen this life for my son.  He has suffered so much in the last year and things that come naturally to you and me are difficult for him. To our human eyes he is far from perfect. 

Our Amazing God; however, looks at my son and sees that he is made in the image of Jesus and that his disability does not hold him back from doing the Lord's work. His disability and cancer have been used by God to touch us all.  We never want our children to endure hardships but God, our amazing God, has used my son to touch others and that makes me overwhelmed. 

So instead of hosting a pity party for all the things like competitive basketball that my son will not excel at, I am overwhelmed and amazed that our God has used his disability and stage four cancer to teach me and to teach you How He Truly loves us.  That was the lesson that God taught me this weekend in the basketball gym. 

Jeremiah 29:11

For I know the plans I hvae for you, declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future.

Winter Wonderland

Today's snow fall was goegeous.  We woke up to a beautiful winter wonderland and it was actually sunny and warm so the kids could enjoy playing in the snow.  David and Hope have both been coughing this week so they were only allowed a few minutes of fun outside. 
This little girl was so excited...

until she realized that the snow was so deep that she could not walk.  She lasted maybe 10 minutes before she was crying to come in. 

She did last long enough for a annual snow picture!

Sweet and wonderful Kyle even tried to help her navigate the snow piles but it was over her knees and girlfriend could not move. 

Kyle helped shovel some and he loves to roll around in the snow to play football or even basketball. 

The snow was even too deep for sledding and the boys had to make a path to get the sled to even go down the hill.  David did not last must longer than Hope and because of his bronchitis earlier in the week that was fine with me.  We have enjoyed these days at home getting stuff done but I am ready to get back to preschool next week and I am ready to cheer on our Hornets this weekend in a local tournament. 

Snow Day

I am sitting at the computer with a big glass of tea, my babes around me, and we are watching it pour the snow.  It is a serious white-out here in our neck of the woods.  I am not a huge snow day fan anymore due to my hubbie's job, but I will admit that this snow is beautiful.  My kids are ecstatic and already begging to go out in it.  My rule has always been that it pretty much has to stop snowing to go out and play in it. 

I am still working on this new way to upload pictures to this blog and I skipped over a few from the last weeks or so.  This picture of Hope makes her look like a kindergartener.  Oh wow, it seems that the third grows up so quickly. 

She absolutely adores preschool.  Yesterday we were out of school for flooding and today we are out due to this hard and heavy snow pouring down.  She gets a little miffed when Daddy cancels school. 

Last night I got to meet the Jonas' new baby, Sage Jocelyn.  My friend Brandi and I went to visit them at the hospital.  My friend, Suzanne had to work really hard to welcome her into the world and it was such a blessing to meet that sweet new baby.  She is simply beautiful and I am so happy for them.  Their oldest daughter is Kyle's age.  They then adopted two boys (not at the same time) from Guatemala, and now they have added a little girl to their family.  They are living proof that God has the final say in the size of your family. 

We are in for the evening with all this snow pouring down.  It is simply beautiful and we are anxious for Mike to get home safely in this mess.  I have been spending a lot of time listening to podcasts from Oak Hills Church.  I feel like God is reminding me in this season of my life that He is first, others are second and I am third.  I am not sure why this lesson is everywhere for me right now, but I am learning and praying how I can give to others.

Sadly the last year I have had to be so inner-family focused getting David through chemo and all the drama that cancer can entail.  David's health issues and specifically his kidney issues are always on our minds.  I pray; however, that this season I am able to give back to those who have encouraged me over the last year and to those that need encouragement. 

I am enjoying these home days to clean out some cluttered spaces in our home and get ready for the Weecycle event in about a month.  Hope is growing so fast and not only has she outgrown lots of clothes but she has also outgrown some toys.  I want our home to evolve as the kids grow up, and today I am getting rid of the baby/toddler stuff :( 

Praise the Lord!!

Blessedly and amazingly I figured out the whole picture upload problem.  It has to do with the fact that blogger and Picassa pictures are now linked and you have to go through picassa to upload pictures.  Despite my grumblings it is kind of easier now to upload now that I have figured it out:)  This is a random post catching up on pictures from the last week:)

Hope and Macy at preschool.  Hope loves preschool and is doing so well socially and academically.  She is still shy, but she is coming out of her shell more each day.
I love this picture of my kiddos in their new cool hats.  I am not sure why they are all crouching down, but they are.  David's hat was made by Samantha Bailey, Hope's was an online deal earlier this fall, and Kyle got his new hat for Christmas. 

This picture makes me smile and tear up all at the same time.  This is David during his first Upward basketball game.  Last year he made it to one Upward practice before his cancer diagnosis. This year he is back on the court and loving it.  He has to wear his headband to look like Lebron James, his hero.  Upward is a christian-based sports program and we love it. 

David in action!!!  We are so proud of him!


This picture looks like the game is rough but it really is not. His doctor or kidney doctor might be stressed to see him on top of Micah, but it is really a gentle game. 

I love this picture of my two youngest snuggled in bed.  This picture really shows how much hair David has now.  I gave him a little haircut the other night while he was sleeping:) 

I am hitting the gym pretty consistently trying to get in shape.  Sitting around a hospital the last year has not helped with my cardio health, so I am working hard to be healthier.  Hope and David love the childcare lady there, Ms. Dreama, so it makes it easier that they enjoy going. 

 We are facing another UVA visit next week and Mike is unable to go with me that day. Hopefully it will be a easy, quick appointment.  If you have Pop Tabs, we will be taking them to the Ronald McDonald house that day. 

My other New Years Resolution was to spend time in the word of God daily.  What has helped me tremendously with this resolution is the podcasts from Max Lucado. If you see me smiling on the treadmill at the gym, it is because I am laughing and enjoying these amazing and uplifting sermons.  They have helped me stay focused on God throughout the week.  My dear friend Tracey and I text back and forth all the time about the sermons. 

That is the Robinson family update for today.  I am so thankful for your prayers and encouragement today and always. 

HELP!

I am in a blogging rut simply because I am having difficulty uploading pictures to blogger??!!  Any help out there?  I am struggling and I am wondering if I should switch my blog to wordpress instead?  Please comment or email me if you can help me. 

Shew now I feel better.  I miss putting pictures on here because we have been busy living and loving life and I want to share.  We have been a basketball-loving family with Kyle's AAU team and David's Upward team. David scored a basket in his game today and we all went nuts!!  Go David!

We are approaching another UVA appointment for David and franklly we are at peace.  Kyle got full braces put on last week (yikes!) and participated in his school spelling bee.  We are rolling along enjoying each day as it comes.  Thank you for continuing to follow us on this life journey and praying for our family.

David's Kidney

This week we had a recheck of David's labs.  Thankfully his Creatinine has dropped from .9 to .8!  We will take all the good news we can get when it comes to Mr. David.  His BUN is still a little high, but potassium is in the normal range.  Please continue to pray for David's sweet kidney to keep functioning as normally as possible. Considering the beating it has taken between chemo, radiation, antibiotics, surgery, and such over the last year we are thankful that it is still doing its job.   

We return to clinic at UVA January 25th and then his next scan will be in February.  Yes, it seems to us that those three month cycles roll around pretty quickly.  Sigh. We just keep the faith and keep our eyes focused on Jesus. 

I have had several ask me lately how do we live knowing that the cancer could return at anytime.  We certainly know that and we try to live and enjoy every moment.  We cannot; however, dwell on the "What ifs" and live in fear.  We believe that God does not want us to live in fear but live for Him and "cast all of our cares on him for He cares for us" 1Peter 5:7.

I am blessed with many ladies in my life who encourage me, make me laugh, and we share God's word together even if it is through texting and facebook.  I am also thankful for all the encouragement and support we get through this blog.  It makes me want to cry humble and thankful tears when I run into people and they say that they follow this blog and are praying for us.  Thank you.  I am so thankful for my kids who keep us laughing and for Mike who keeps me in check when my mind starts wandering to a scary place. 

David is really doing awesome.  We are so thankful.  I remember that one of the nurse practicioners commented that we would see a big increase in David's energy and overall well-being six months after he finished chemo.  January marks the 6th month and frankly she nailed it.  He has grown and inch or two, put on a pound or two and looks healthy and great.  We are so thankful and it makes us so proud and happy to see his energy and spunk return.  We give God praise and glory for every inch he has grown and every pound he has put on. This time last year he was spiraling down to 45 pounds and the other day he finally hit the 60 pound mark!!  (that was with his heavy Jordans on but we will take it!)

Last year my doctor prescribed some medicine for me due to symptoms of Post Traumatic Stress Syndrome after David's diagnosis and hospitalization.  I tried really hard to go off of that medicine over Christmas break.  Lets just say that maybe it is not quite time.  The nightmares came back in full force and my hands started shaking again.  I know that I suffer from that because tonight I used some new soap from Bath and Body works and as soon as I put some on I started shaking.  It was the exact soap that was in the kitchen at the Ronald McDonald House and it brought back all those memories of being there.  Those two weeks we were there were the scariest, and though that place is wonderful, it signals for me the darkest time of the journey. I know I have a lot of healing to do still. 

I am blessed woman that has a lot of love around me, sweet friendships with some Godly women who make me belly laugh, amazing kids who remind me what life is all about, a loyal and steady hubbie, and a Savior that loves me despite my meltdowns and pity parties.  If I have the love of family and friends and promises from our Savior who desperately loves us, then whom or what shall I fear? 

Hoops Weekend

For some bizarre reason, blogger is not letting me upload pictures tonight.:(  Oh well, I will try again another day.  This weekend has been full of basketball.  Kyle played in an AAU tournament and David had his first Upward basketball game this weekend.  He looked so cute in his uniform, new Jordans, and his Lebron wanna-be headband.  He looked cool for sure:)

 It is so full circle that he is participating in Upward this year, because last year he went to his first practice and then came home complaining of his belly and life has not been the same since.  To see him out there playing with a full head of hair is hard to believe.  He looks awesome-tall and amazingly healthy.  He is such an amazingly strong and courageous guy.  I am so proud to be his Mommy. 

This morning we had to miss church due to the tournament for Kyle, so Kyle and I listened to a sermon from Oak Hills Church.  We listened to this sermon by Randy Frazee http://vimeo.com/50372194 and we both were glued.  Amazingly Randy Frazee has a son named David with a disability.  It was such a sweet time of "church" this morning with my eleven year old riding down the interstate.  We chatted about the sermon after it was over and Kyle is really getting to the age where matters of faith make sense to him.  He is at such a great age right now. 

I throughly enjoy the sermon podcasts from Oak Hills Church.  My dear friend Sarah introduced me to them and I have spread the word to many others about them.  I walk to them at the gym, listen to them traveling, and today I used the sermon to listen to the word of God on the way to the tournament.  Maybe next time I should listen to two sermons so I will not yell so much at incompetent refs:)  If you need a little recharging during the week I encourage you to go to www.oakhillschurch.com, click on media and check out all the sermons that are archived.  Mike and I both really enjoyed the series You'll Get Through This based on the life of Joseph. 

Better get the kiddos in bed.  Have a great week!

2012 Highlights

Around New Years I always try to do a highlight post from the previous year.  This year I have really struggled with it because frankly I have cried, prayed, traveled and been away from home way too much.  On the surface I really did not think that 2012 needed a highlight post.  Then on second thought this year has been very difficult, but it has also been the year that I have seen first hand the "amazingness" of our God.  I guess my cushy, comfy life did not allow me the opportunity to lean on our God until my baby was in agony on the 7th floor of UVA hospital. 

So here are the highlights of 2012. 

I will sing of the Lord's great love forever, with my mouth I will make your faithfulness known through all generations. 

Psalm 89:1

Through UVA we met some amazing families battling their own nightmares, and here is David with Haley.  We were next door neighbors for two weeks after David's surgery and they are such a special family to us.  We vented together, cried together, and watched our babies enjoy playing together.  We were even rowdy enough one time that we needed a security guard to intervene!  (Haley is still at home waiting on a heart:)

We were blessed with amazing prayer warriors and friends.  Ashley, Matt, and Jason were constant friends and visitors to us while at UVA. 

We were so thankful that the only snow of 2012 we were home and David was able to bundle up and enjoy it for a few minutes:)

David got a very special visit from the Eagle, Challenger!!

We were blessed in 2012 with wonderful support from David's school and here is Mrs. Hubble and Rocky Duke, David's Monkey in his chair. 

While we were home we enjoyed watching our Kyle pitch for regular season and All Stars. 

David not only played a tball game or two but he was asked to throw out the first pitch of the Little League Season.  It was a special moment because not only was he in uniform that day but Kyle got to catch the pitch. 

We were so blessed with Camp Pendleton while we were in Charlottesville.  Not only did we make lots of memories in that cozy condo, but we also enjoyed the playground down the street. 

We were away so much last summer, but in between treatments, we were allowed to come home for 2 1/2 days over David's birthday and the fourth of July.  Riding on that boat with the sunshine on our face felt like pure heaven!!

There was one day in the month of June after David's port removal that he was in bad shape. His stats on his monitor were crazy and he would not speak or respond to us.  Mike and I were heartbroken because we were afraid that he had lost his fight and spunk.  We called my parents and my Mom brought down Kyle and Hope to try to cheer him up.  Within several hours of their arrival he was interacting with them and responding to them.  Mike and I were so relieved and happy after several dark and exhausting days of watching his monitor. 

David's 8th birthday was an emotional day for us all.  We had to head back to UVA that afternoon but we had lunch with some of David's favorite people and went to the movies to see Brave before heading to Charlottesville. 

One of the highlights was a visit from our friends at SMyth County Ambulance who came to visit and who brought David a huge surprise!!!

Over Labor Day Mike took Kyle and Hope to Shreveport to spend time with his Dad.  Here is Opa and all of his grandkids except David.  We had no idea that only 6 weeks after this picture was taken that Opa would be going to heaven. This picture is precious to us now. 

This little love has thoroughly enjoyed preschool with Mommy and friends this past fall.  She loves it so much and I am thankful to spend this time with her doing something we both love before kindergarten in 18 months. 

In September we took a day trip to Dollywood which was our first getaway to somewhere besides Charlottesville for family fun.  We had a ball!

 

It was sad that Opa passed to unexpectedly, but the time in Arkansas with Mike's whole extended family was a blessing.  We enjoyed time with lots and lots of family, met their children, and enjoyed the fellowship despite the sad reason we had all gathered.  The trip also opened our eyes to some amazing work that God has done in the Robinson boys' lives and for that we are all so grateful. 

 

We eagerly  anticipate 2013 knowing  from our experiences in 2012 that there is nowhere that God will not meet you.  We have seen his grace and mercy first hand and we are entering 2013 as different people more intentional in our walk with God, relishing relationships with family and friends, and firm in the knowledge that Your love, O Lord, reaches to the heavens, your faithfulness reaches to the skies. Psalm 36:5.

 

 

Ringing in 2013!!

We rang in the new year last night with our third annual progressive dinner.  This is the one event that my kids get SO excited about and anticipate it for weeks.  I guess to a child it is just so out of the norm and fun to go to three different houses for appetizers, main course, and dessert.  It is a long night but it gives us plenty of time to catch up and laugh.  My belly is actually sore from laughing so hard!  It was truly a wonderful night.

I had my doubts yesterday that I could go through with the night.  We got word yesterday morning that one of our UVA friends, Alyssa, went home to be with Jesus. She was Kyle's age and Kyle remembers that they were studying last year for the same SOLs in the hospital.  She fought a courageous battle against osteosarcoma.  She is now a beautiful ballerina dancing with Jesus with both of her legs.  My heart is so heavy for Jeff and Lynn and little sister, Lexie. 

After hearing the news about Alyssa my mood darkened into a deep funk and it felt almost unfair to be ringing in the new year with laughter and friends.  Then I remembered that one of the life lessons that cancer has taught us is to seize every opportunity to make meaningful memories with loved ones.  With that new mindset I headed to the Dollar Store and bought boxes of candy to hand out as prizes with our games. 

We started the night out with appetizers at the Osborne's house.  It is hard to discipline yourself to nibble and not eat too much there.  She had some yummy finger foods!  Then we headed to our house for the main course.  I had made lasagna and chicken cordon bleu casserole with Toni's salad and bread.  We had picked up some pizzas for the kiddos and we actually sat down and ate. 

After eating.... it was game time! We usually plan some family-friendly Minute to Win it games and this year Tonya came up with some good ones!

Here is my husband with panty hose on his head. In the leg of the panty hose is a tennis ball.  The object is to swing the tennis balls to knock down the water bottles.  To watch our grown men with panty hose on their heads made us belly laugh.  We are also a very competitive group of people which adds to the laughter. 

Kyle trying to knock down those water bottles!  Have I mentioned how competitive we are??!! :)

Yesterday I went to the dollar store and bought boxes of candy for a cake walk type of game.  The kids walked in a circle and when the music stopped they stood on a number.  Whoever's number was called got to pick a prize out of the bucket. 

Tonya also did a minute to win it game where the kids had to suck up M&Ms with a straw and make a smiley face on their plate.  Cute!!

Kyle's fourth grade teacher on the left and his current teacher, Mrs. Roark on the right.

The annual group picture of the kids!  Hope would only get in the picture if sweet Kelsey would hold her:) The Jonas' are expecting their fourth, a little girl in a few weeks so amazingly next year there will be an addition to this group!

I was loading up the kids and Mike went back inside to get something, or so I thought.  Next thing I know he comes out in his old white bucks-which were his partying shoes from college.  Evidently these shoes are hot again (Jonathan spotted them on the shelves at Belk) and Mike is smug in the knowledge that he is once again a trendsetter.

The ladies of the group in Macy's room. 

I made a homemade centerpiece for the table for dinner:)  I am such a holiday dork.

The last game we played was a number guessing game.  The kids and adults had to put down their guesses and whoever got the closest won!  Renee won both of them-she is such a smart cookie!

It was a wonderful new year full of laughs and good food.  After the scary and often horrible 2012 it felt right to laugh and enjoy fellowship with some friends.  Between our cancer journey with David and Suzanne's pregnancy we have not gotten together in a while.  It felt so good to laugh and watch our kids enjoy time with their friends.  We never know what tomorrow will bring, but cancer has taught us to enjoy every moment.  May God bless you and your family in the New Year and may 2013 be a year for peace and love in your household.