Friday, November 30, 2012

Sweet Relief

After a long, long day at the hospital we received a phone call on the way home that David's scan was CLEAN!!!  No evidence of disease or abnormality was how the oncologist clarified it to Mike.  Praise the Lord we are so incredibly blessed with this wonderful news.  We were also so thankful that his blood pressure was perfect, labs were perfect, urine was squeaky clean, and that his creatinine has gone from .9 in September (not good), to .8 in October to .7 today!!!!  The kidney doctors goal for his Creatinine is to be under .7 so we are so thankful.

There is so much to share about the last 24 hours of our lives, but I must share that God's peace was completely enveloping us.  If you are friends with me on facebook you will know that I shared that last night on the trip down to Cville Mike brought his "cd collection" and that he choice of Cds to keep us calm and not stressed out was John Schneider.  Seriously, from 1987 I can't make this stuff up!

We got so tickled about his refusal to leave the 80's and his choice of music that we laughed and carried on.  If you were a fly on the wall you would have thought we were two crazy teenagers on a road trip instead of two scared to death parents taking their baby to face the dreaded CT scan.  That was Gods peace that allowed us to laugh and joke and breathe.  We actually had fun!

David LOVES having our undivided attention and he too was silly!  This morning when we arrived at the hospital before dawn he was given some Versed to make him loopy and it is a great amnesia medicine.  The staff was wonderful and not only allowed us to give him a quick haircut once he was sedated but got all the bad stuff over with while he was under so he did not feel any ouchies today.  Anyway, David refers to the CT machine as "riding the donut" so while he was loopy he made up a song about riding the donut and we were belly laughing at him!!  So instead of being stressed our pre-op room was rocking with laughter over our boy. 

So tonight we are home ready to enjoy three more months of semi-normalcy until we face the dreaded CT machine again in February.  Someone said to me tonight that they are so glad that cancer will soon be a distant memory.  I pray that happens but I also know we look at our lives in three month increments.   Sadly our lives will never be the same, but we are so thankful for days that we leave that hospital with good news.

Tomorrow we are so excited to attend the Thomas Musser Mr. STrong walk to raise money for St. Jude. I am very emotional tonight thinking that this time last year David was not able to be there and tomorrow he is going to be my date and help start the race!!!  Praise the Lord! 

Tomorrow night David is getting to sing in a children's choir with James Rodgers here locally at the Lincoln Theatre.  I cannot wait for a special night with some amazing people!!!! 

I am exhausted, overwhelmed, and oh so thankful tonight.  I told God last night that I would praise Him tonight no matter what the scan today said because He has been so faithful to our family and that I trust in His plan for our family.  So tonight I am thankful for a God that gives the peace that passes understanding, who carries us through the hard times and allows us to experience moments like today of total joy.  Good night from a happy Momma:)

Tuesday, November 27, 2012

Thirteen Years

Today is our thirteen year anniversary.  I cannot believe we have been together this long and tonight we have had fun listening to some of the music that my brother sang at our wedding.  Listen to the above song (ignore the odd video) but this is the song that we danced to for our first dance.  My brother sang and his friend Brett played the guitar. I still tear up thinking about that sweet moment when we were dancing and my knee was swollen and throbbing.

If you do not know the reception knee incident that resulted in our wedding night being spent in the ER, stay tuned and I will chronicle that funny story another day. Our wedding was wonderful and truly the happiest day of my life except for being in so much pain that I could not eat or drink any of the wonderful food that we had planned for months.  Seriously I felt like a beautiful princess meeting her prince charming that night:)

Moving along.... tonight we celebrated our anniversary by going out to eat with our three kiddos in tow.  That is how we roll in this house and we would not want it any other way.  Mike is not perfect, I am not perfect, nor is our marriage, but we do love each other and we have our Jesus.

I could choke up thinking how naiive we were when we said those vows.  The last thirteen years have been wonderful but certainly not smooth sailing.  Our first born had/has severe allergies and now asthma that has been a whirlwind of nebulizers, inhalers, and prednisone.  We had a child with a disability that we were not expecting and then eight years later he was diagnosed with stage four cancer.  Our sweet little unexpected princess scared us to death on the day of her delivery by turning blue several times. 

Tonight; however, I am thankful that God blessed me with a man who is loyal and true to his word.  He carries this family in so many ways and tonight I am thankful that despite the unexpected detours of our marriage, we have held  onto each other and clung to our Jesus. 

When the doctor shared with us the news that David had Down Syndrome Mike was not at the hospital with me.  I had to call him on his cell phone between Orange county and Charlottesville.  Anyone familiar with that area knows that eight years ago cell coverage was spotty in that area.  I called him and I said "honey they think the baby has Down Syndrome" and the line cut out. 

Twenty minutes later he walked into the hospital room and he grabbed my face covered with tears and he said "God blessed us with this baby because you are such a wonderful mother and He knew that you would do a great job with him."  I am a blessed woman to have Mike  Robinson in my life. 

Just a year ago I once again had to make a hard call to my man about that same little boy.  Mike met the ambulance at UVA because he was in Williamsburg.  He was there way before we were and he paced the ER waiting on that ambulance with his wife and boy in it.  I remember they were moving us through the ER so fast and I stopped the wonderful people and opened the door to the lobby of the waiting room and yelled for him out of desperation.  I just needed to see him.  Our marriage is not perfect but he is my strength.

I pray for many more years together in marriage.  I feel that God has done amazing work in our marriage and I praise Him for bringing us closer together and towards Him.  Thank you Mike for thirteen years.  I am proud of the Godly man you are, for the examples you set for our children, and it melts my heart to see you play babies with our girl.  God has big plans for you Mike Robinson and I am thankful I am along for the ride.  Forever and always. 

Sunday, November 25, 2012

Carrying On

We have been busy, busy bees around our household this Thanksgiving break. It is partly out of necessity to get our house organized and ready for christmas.  Last year my Mom and Grandmother decorated our house while we were in the hospital to have it festive for our return home.  This year we have gone all out because....

these two are soooo excited for this christmas season.  They were excited about everything that came out of the attic. 
They were my busy bee helpers helping me decorate the trees and we had such fun. 
Christmas decorating wore this little angel out and Friday night she fell asleep watching her christmas lights. 
I bought this ribbon two years ago and I am just now getting around to using it to decorate one of the kids trees.  I am a sucker for cute ribbon and this train/ABC ribbon melted my heart. I was able to make it into a nice bow topper for the tree. 
Despite the fact that Mike and I are extremely anxious about David's scan this Friday, we had lots of laughs around our house.  Mike and I enjoyed a night at a local restaurant for a leisurely meal with another couple and it was nice to have an adult meal at a nice restaurant we would never take our kids to.  The upside to having cancer is that David and the kids got some cool hats last year that they are enjoying pulling out.  It has been so cold this weekend that they got to enjoy them.
My decorating style is to just "throw it together" and I literally threw some garland, lights, and stuff around my bakers rack.  Martha Stewart may not come calling, but my sweet girl loved it!  We have read Christmas books, colored christmas pages, and decorated our entire house.  I love every minute of it.  I just pray the scan is clean this week and we can come home and enjoy it. 

Mike has organized closets, random drawers, our movies, etc.... I think we are both just trying to stay busy to keep calm about he scan Friday.  We are both nervous and scared but we trust in God's plan for our family. It is gut-wrenching to think that the beast called cancer could have crept back into our boys' sweet body and it rearing its ugly head again.  We are also always nervous about his kidney function.   We covet your prayers for David on Friday. 

I was doing okay staying busy and enjoying the kids until church this morning.  Our worship minister led us in some amazing worship and I was just overcome.  Jonathan gave the congregation a chance to pray at the altar and I found myself sobbing at the altar.  We are so thankful how far God has brought us and we trust Him with our family, but it is hard to not be scared.  Cancer is such an ugly beast.  

One of the songs that I have played over and over and over again this holiday weekend is Chris Tomlin's O Come All Ye Faithful.  The last lines of the song "we will praise your name forever" give me cold chills everytime.  No matter what the CT scan says this Friday we will continue to praise Jesus' name forever.

Friday, November 23, 2012


Yesterday for Thanksgiving we ate well, laughed a lot, and enjoyed time with family.  Considering last year we ate chicken fingers in the UVA cafeteria, my Mom's meal looked like a magnificent feast! 

Today we have spent the day pulling out the christmas decorations and boy do we have one excited three year old!  She is over the moon excited and at one point today she was running between the totes of decorations yelling "I just can't control myself!"  Christmas is going to be magical in our house this year because of one little girl who is soooo excited!

Mike and I have done some shopping, have dinner plans with other adults tomorrow (shocking I know) and we are enjoying the time at home with our kiddos.  I can tell that the upcoming scan is on both of our minds, but yet we try to live in the moment. 

My stomach knots up at the thought of facing the CT scan again, but with God on our side, Whom Shall We Fear?  Tonight I made our calendars for 2013 based on pictures from 2012.  I broke down looking at the pictures of our boy over the past year.  I sobbed and wept, then I turned on some praise music  loudly and sang songs of thanksgiving to God.  Our God took that sick  boy and brought him through the harsh, but necessary chemo and radiation.  To God be the Glory for the work that He has done in and through our Rock Star. 

No matter what the scan next Friday says, we continue to trust in His plan for this family.  We know that through every storm He is Lord and that is the hope that we will cling to as we walk into that big hospital next week. 

Next Saturday; however, I hope you make plans to come and walk or run in the 3rd annual Thomas Musser Mr. Strong Race on December 1, 2012 in Rural Retreat.  Registration begins at 9 a.m. and registration forms are available at First United Methodist Church or you can register the day of the event.  Please read Thomas' Dad's latest blog entry about the event

We would appreciate your prayers for our family this upcoming week.  David looks great and continues to make us smile each day.  We are so proud of him and we know no matter what happens next week we will continue singing praises to our God. 

Wednesday, November 21, 2012

Thanksgiving Preparations!

We are in thanksgiving mode around here.  Last year we missed out on lots of holiday festivities, so this year we are living it up!

Yesterday I visited David's class and took them some Snoopy Thanksgiving snacks in a cup.  It was so much fun to see David's classmates and be there with them.  Can you believe all the hair this child has?
David and his sweet friend, Kelsey.  Kelsey sits right beside him and is his friend in the neighborhood and school.  She is such a sweet girl:)
Earlier in the day Hope had her thanksgiving program at preschool.  Her Daddy came by to sit with her in the audience while her friends got up and sang.  Bless her shy little heart. 
Hope has made some sweet friends in preschool, but she already knew Brooklyn.  These girls are sweet, sweet friends and here they are modeling their turkey hats.  They wanted to take this picture for "Ashee" and check out that Hope glued her head on upside down. I also love that Brooklyn is winking:)

She was so excited for the program until it was time to file into the chapel and sing.  She freaked and sat with her Daddy:) 
I love this picture of Olivia, Hope, and Brooklyn.  They were running around acting like turkeys going "gobble, gobble" and it was so cute!!! 

Today has been a wonderful home day today.  David, Hope and I pulled out Chris Tomlin's christmas CD called Glory in the Highest and we jammed.  I was singing so loudly that David asked me to be quiet:)  A wonderful nurse at UVA made the CD for me last year and it brings back so many memories of listening to it quietly after David went to sleep. 

We are off to eat lots of turkey tomorrow in Radford with family.  We certainly have much to be thankful for this year:)

Monday, November 19, 2012

Week in Pictures

The last week has been totally exhausting both mentally and physically. Mike was out of town last week and not only did I parent solo but our days were full!  Here is the past week in pictures:)

Last Thursday we celebrated Ashley's birthday by going to see Wreck It Ralph and eating at Riverfront.  It was yummy and we gave her a very practical gift of a Walmart gift card and a marriage devotional book.  We are so blessed to have her in our life. 
Today one the preschool classes had their thanksgiving program at preschool and here is Hope with two sweet girls-Macy and Sarah.  Hope actually wore tights (shocking!), boots and a skirt.  I even talked her into her turkey hair clip!
She even got to wear her turkey hat!  Notice that she glued her turkey face on  upside down!  I love it!
My first born is growing up way too fast and this past week he had to visit the orthodontist to get six braces on his upper teeth.  He took it all in stride and was not too embarrassed that I took my camera with us to get them on!  Ha!
Last Tuesday night we were invited to our beautiful new hospital for a dessert reception for the giving tree.  We as a family purchased a leaf on the giving tree for David towards the chemo mixer and amazingly one of the elementary schools also did a leaf for our boy.  It was a wonderful night at our hospital.  David entertained a wonderful group of ladies and here he is with Ms. Penny and Mrs. Groseclose doing his touchdown dance!  He was playing football on my phone and whenever he scored he would make them do the touchdown dance!
These pictures are amazingly out of order, but here he is pre-braces getting ready to get them on.  I was THAT Mom that asked to go back and take a picture:)
Another dessert reception picture.  This one not only has Ms. Penny and Mrs. Groseclose, but Mrs. Dawn that blessed us with the Tech tickets.  We are so blessed to have so many prayer warriors in our corner!  We are also blessed to live in this amazing community. 
One of David's leaves on the giving tree thanks to Rich Valley Elementary. 
A leaf that we did in honor of David. 
Right as you come into our hospital you see this beautiful giving tree.  This picture does not do it justice-it is really breathtaking. 
After the craziness of the last week we are so excited for a holiday this week to rest and catchup after a busy busy past week.

Thursday, November 15, 2012

Random News

I am too weary to try to put an eloquent post together tonight so I am going to summarize our crazy, busy week full of love.  Tonight we went to the movies and out to dinner to celebrate Ashley's birthday!  She deserves a whole blog post sometime soon because she is just that big of a blessing to our family.  She has been apart of our family for 4 1/2 years and most of our family memories involve her. 

We are surviving this week.  Mike has been at a conference this week and Kyle got braces:)  Hopefully tomorrow I can download some pictures from the week, but he looks like a pre-teen now with a mouth full of silver.

I have not had too much time to dwell on the anniversary of the nightmare, because I have been consumed with my house.  We have had an unexpected kitchen redo this week and even though I love all the new stuff, it is a lot of work to move stuff around, clean, and go through cabinets that have not been touched in a long time. 

This week I have spent my reading time at night reading past entries on the blog.  I love blogging because it is therapeutic and a way to share my faith.  The last year of our life has been such a blur that I am so thankful that I took all that time to blog while enduring the nightmare because now we have a running record of what we have been through.  Not only will it help me remember details that are now fuzzy,  this blog is such a testimony to the power of prayer. 

After David's surgery we would list how you, our faithful prayer warriors, could pray for David.  It was amazing to see how we we would be so concerned about an issue, ask for prayer and see the prayer be answered.  I have really enjoyed re-reading those posts from our early days at UVA even if the pictures are gut-wrenching to see.  I miss his red hair so much and his full little face, but we are just thankful he is here with us.

I have also been blessed with some amazing love this week.  The texts, emails, messages, and love have encouraged me through a hard week emotionally and one where I have single-parented three kiddos.  It is never easy when Mike goes away and because of the love of some great friends, I have laughed, talked, eaten way too much, and just enjoyed the company of some ladies that get me.  God has blessed me with some amazing friendships in this season of life. 

Misty and I also got to have lunch with another cancer warrior Mom this week.  The Thomas Musser Mr. Strong Walk is coming up December 1st.  We are so excited to be apart of this event again this year to raise money for St. Jude and to raise awareness of childhood cancer. I am not sure I am in shape to run the 5K but I am excited that this year David will be with us and that I will be able to walk it.  Please make plans to come out for this event again this year.  Misty Pugh and I will have some registration forms for the walk at First United Methodist Church.  I am very excited to update David's board with new pictures this year for the walk. 

I am weary tonight after single parenting this week, getting two preschool classes ready for a turkey program next week and an ambitious christmas musical in a few weeks.  My house is still a mess from the unexpected remodel, but I am feeling so blessed.  You all are such an encouragement to us and we are so thankful that you continue to hold our family in your prayers.  The next scan date is looming (November 30th) and needless to say we are nervous about this one.  This is the longest he has gone without treatment before a scan and this one makes me nervous. 

Despite the outcome we know that he holds us all in the palm of his hand and that our faithful God will be with us that day and always. 

Tuesday, November 13, 2012

Song in My Heart

For the last few days I simply cannot stop singing.  God has put some awesome music in my head for me to enjoy and I have sung all week long.  I guess God knew that we would need some encouragement this week as this is THE WEEK that David was diagnosed last year.

We are so thankful that we are here.  I am so thankful that this time last year the nightmare was just beginning with the first mumblings of David's belly hurting and now we have had the surgery, finished treatment, and we are at the end of the nightmare.  We are so thankful that David survived chemo and that he is happy and healthy today. 

I am also so thankful for our faithful Father who has walked this last 12 months with us, always encouraging us when we needed it and providing so abundantly for our needs.  We are changed people today because we have seen the life-changing power of our Father and how he showers mercy and grace upon us when we need it most.  We are changed simply because of the awesomeness of our God.  The God that we read about in the bible is the same God that has wiped our tears and carried us through the dark and sad days of all the hospitalizations, chemo, and infections.   He is so faithful.

But sadly we also grieve this time of year because this is the anniversary of our life changing forever.  We will never be naiive enough to think that cancer will not mess with one of our babes, we will never take a moment with him for granted ever, and we will constantly live in fear that the beast of childhood cancer can come back at anytime. 

We also grieve our healthy David.  Sadly the chemo and radiation have some negative side affects that we will always have to deal with.  David's kidney is a constant concern to us and we know down the road he could have some serious issues to deal with after all he has endured. 

I know when David was first born and he were told he had Down Syndrome we grieved  then too.  We were and are so thankful for the amazing gift that he is, but the baby we brought home from the hospital was different than the baby we imagined having.  I thought we would leave with Kyle #2 and we left with a beautiful gift named David. 

We are blessed as a family to have these three amazing kiddos, but sadly November is always going to represent for us a dark and sad time in our lives.  We are never going to be the same because of cancer and today I am sad that the last 12 months of our lives we practically lived at UVA and that we will also be there for many decades to come.

The funny thing about this week is that I thought it would be bad.  It has been difficult I am not going to lie.  People hurt your feelings and I have just had trouble focusing on the here and now.  My grief tries to consume me today but amazingly my kitchen is providing me a nice diversion.  It has fallen apart:)

In the last month our facuet in our kitchen started leaking and then our garbage disposal died.  Then just this past weekend our refrigerator died.  So I have been consumed with picking out a new fridge and talking to Mr. Norman who came and is trying to help us put it all back together with a new facuet and disposal.  Funny how we get a diversion when we need it the most?!

Thank you all for your emails, prayers, texts, and love.  Those closest to me know I am having a rough week and I am so blessed to have some amazing friends around me.  Tomorrow Misty and I are having lunch with another cancer warrior mom, Lisa.  They both encourage me so much and I am looking forward to that.  Thursday some awesome friends have planned a lunch after preschool where we eat and chat and our kiddos play.  It is always a blessing to be around these gals and I am looking forward to one of our "three hour lunches" as our husbands so fondly call them. 

I know that this dark time will soon pass but even today in my grief and sadness I feel my Jesus.  He has put a song in my heart to remind me that He has always been with us and that He will always be with us.  He has been so faithful to us that I know he is our friend for life. 

Friday, November 9, 2012

My Apologies

I am so sorry that I have not updated the blog much this week.  I have been on the blog a lot, but I have been reading updates from this time last year.  This weekend last year was the last carefree weekend of our lives before cancer came tumbling into our lives attempting to steal our peace and joy.

Physically we are all doing fine.  David has a head full of blondish hair on his head and is doing great.  Physically we are all okay, but I know that this time last year is weighing heavily on our minds.  It is simply surreal to think that our sweet baby has fought the fight that he has.  On one hand I could weep with what all he has been through but then on the other hand I am in awe of his strength and fight. 

This time last year my Dad was packing to head to a fishing trip on the Rappahanock River and Mike was packing to head to a conference in Williamsburg. Both of them are repeating the trips this year but it will be with a heavy heart that they pull out those suitcases. 

This coming Wednesday will be the day that our lives changed forever.  As the date gets closer all the memories from last year come tumbling back.  I am so sad that David has endured so much, but as I told his caseworkers from Mt. Rogers this week it is truly hard to be sad when I  see in hindsight how God was preparing us for this trauma in our lives.  Now that some time has passed I can see his handprints all over the situation in how he prepared us for this tragic event.  I have never felt the Lord's presence or seen his handiwork more than I have over the last year. 

I have been very distracted this week.  Everything reminds me of this time last year and it is hard to stay in the here and now instead of traveling back in my mind to that time where we heard the "c word" for the first time in relation to our baby. 

This morning I was driving to preschool and this song came on the christian radio. Please enjoy this new song from Chris Tomlin called Whom Shall I Fear

I  began weeping as I drove to church for preschool in gratitude.  Our God who loves us all so much prepared the way for this awful event to come stampeding into our lives.  Sadly we had to endure this nightmare, but the armies of angels and our heavenly Father carried us. 

Instead of being sad and overwhelmed at what we have endured I am so thankful to our God.  When God is on our side Whom Shall We fear?  Childhood cancer is no match for our God.  The part in the song where he sings you are faithful makes me weep because we have seen first hand that our God is truly faithful.

I know who goes before me
I know who stands behind
The God of Angel Armies
Is always by my side

The One who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side.

Nothing formed against me shall stand
You hold  the whole word in your hands
I am holding on to your promises
You are faithful
You are faithful
You are faithful

We appreciate your prayers for us all as we not only endure the memories and nightmares that we are all dealing with, but we are also facing that dreaded CT scan machine on November 30th to check and see if David is still cancer free.  As I told a dear friend the other day, I would just like to wake up and it be December and the dreaded anniversary date is past us and the CT scan is done with great results:)  A girl can dream, huh?!

So once again I turn over our baby to our God knowing that he prepares the way for us and that He is truly faithful.  God knows that I trust him with our future and that no matter what the CT scan says we trust in His plan for our family.  With God on our side, Whom Shall we Fear?

Sunday, November 4, 2012

Happy Sunday

Thank goodness for the extra hour this weekend.  We did a little catching up on our rest this weekend not necessarily because of the extra hour but instead because we all went to bed early because we were exhausted.  The extra hour helped today in that we got lots done.  The kids all decided to get up at their normal time.  For example Kyle was up at the new 5:30 and the other two followed at 6:30.  Kyle loves to play a little XBOX but he is so busy and we normally do not let him during the school week.  So on Sundays lately he gets up so early that he gets a couple of quiet hours of just him and the XBOX. 

Our Hornet Basketball team played in a one day tourney in Fort Chiswell on Saturday.  Some of the boys played 7 games on Saturday.  Our 6th grade team did well and were within three points of winning second place in their age group.  Our 5th grade team won second place in their age group.  Kyle was so tired from the games yesterday that he announced he was going to be early and we did not even have to make him go to bed which is the norm these days.  David made new friends with a lady and two teenagers from Fort Chiswell.  He also played with several of the Hornet moms and dads.  His new thing is to find the last name of whomever he is playing with and tell Laura and I he is now David ____ and he is going home with his new family.  In the course of a weekend he can change his name 3 or 4 times :-). 

Laura did not feel so well on Saturday.  Dr. Clampitt believes she may have a kidney infection.  Seems a little better today and is on a new stronger antibiotic. 

Hope was her normal shy self around everyone this weekend.  She is wide open at home and loves to color, draw pictures, and write her letters.  I keep pressing her to find out which sport she wants to play.  She just announces that she wants to color.

With the extra time available this Sunday because of the time change and no Hornet Basketball practice, I took Kyle and David to play golf.  David loves to ride along with us.  We treasure family time together.  Off to watch the Steelers. Our family wishes each of you a blessed week.

Hornets with their runner-up trophy after a long day of basketball.  We love spending time with our Hornet basketball family during the winter.