Saturday, November 19, 2011

Middle of the Night Ramblings

I am sitting here in the PICU watching my boy rest. I am keeping my eyes on his vitals to make sure that he is remaininig comfortable after this long, hard day. He is resting peacefully and frankly it is hard to tear my eyes off of him to write. He is so beautiful.

I am also sitting here listening to David Crowder Band. IF you have not heard his song How He loves Us then you must. It is the first song that comes up when you pull up my blog. FUMC praise band can rock this song and I have already put an order in that they cannot sing it until we are back in church. Music is so therapeutic.

Today has been long and hard, but with some amazing moments with some of the most treasured people in our life. We have had many visits today and they sustained us. Poor Mike watched the clock during the surgery and really had a rough time. My parents blessedly were here today and brought Hope up. It was so good to see her:) The Osbornes brought Kyle up today and it was awesome to see him as well. Kyle asked a lot of questions-he is such my deep thinker.

I am sitting here now listening to the second song on my blog called The Glory of It all. Love this song so much. While we waited that last and longest hour for sweet Dave we had a great theological talk with Jonathan and Suzanne. Sometimes it is great to have a pastor around who is also a friend so you can have those talks. It made the latest hour much shorter. God's grace is so sufficient and I just pray that through all of this that God will be glorified.

Tonight in th PICU we have our own doctor and nurse. It is 1:1 here and we are in here for pain management and monitering. It is devastating to me to be in here even though I know that this is just a drive thru for a day or two. I am ready to wall paper his normal room with his bible verses from my new cute pink bible. :) I asked a dear friend to bring my bible and she bought me a cute new one-I love it!

I am ready now to explain the port-a-cath. It has taken me a day or two to wrap my head around that one. Basically they surgically put in a permanent line in David that is under the skin on his chest. They will use this long term for access for blood draws and chemo. To access it, they will numb it locally and then inset the needle. This will keep him from getting stuck 6 bazillion times over the next year of his life while he endures chemo.

The next few days will be hard as we try to manage his pain after this major surgery. We were told tonight that we will stay here for 7-10 days while he heals. We do not know when chemo will start but we get the feeling that it will start in the next few weeks.

We have been told that his chemo will be outpatient (Praise the Lord) if it is indeed the Wilm's tumor. We feel like it even though the pathology will take days to come back, because they enrolled us in a clinical trial study for Wilm's tumors today then that is truly what it is. We feel like they would not have wasted the paperwork if they were not super confident that indeed it is Wilm's.

Here is what we are praising God for tonight:

Our marriage-we are like every typical married couple in that we fight and bicker, but watching my man cuddle my David and tenderly kiss his forehead just a few minutes ago reminded me that I am a blessed woman. We have our Jesus and we have each other and I am so thankful for that.

Team David-my friend Lynn started a Team David group on Facebook. I stumbled across it tonight on faceboook and I bawled sweet happy tears. You all have wrapped your arms around us and we are beyond thankful. Check it out on facebook. I have not gotten to read it all yet, but there appears to be a walk to raise money for childhood cancer in memory of sweet Thomas Musser. If we are home we will be there will bells on. I get goosebumps thinking of it...

The surgery results-after meeting post-op with the surgeon then we feel so thankful that there were no surprises. They did find a "place" on his liver but they froze it and sent it to the lab during surgery to biopsy it. Thankfully it was misplaced tissue and nothing to worry about:)

Blessedly his other kidney was okay!!!!!!! That was the best news we have heard all day. Praise be the Lord.

Please pray specifically for:

Kyle and Hope. Pray for strength for my parents as they have Hope over the next few days. Kyle chose to go home with my brother tonight who will take him to his basketball tournament. He will then go to my parents for a night and then back to the Osbornes for school Monday and Tuesday night.

Pain management for Dave-this is where I get a little irrational. Mike informed me that I bossed the attending surgeon tonight over pain managment. Ashley even thought that maybe I wagged my finger in his face-ha! We are adamant that he be comfortable and that they stay on top of his pain. Nothing brings out my ugly side like watching my rock star in pain. He has endured enough already.

He has been out of surgery for an hour or two and he has woken up to ask for his Daddy. I love hearing his sweet, raspy voice:) His blood pressure has been elevated over the last few days because of all that strain on his body from that large tumor. We hope to see that coming down soon.

Okay I am going to be a little bossy now. Mommas trust your motherly instincts when it comes to your babies. When Nurse Brown from MPS called me Wednesday to say that DAvid's fever was 102 then I just felt in my bones that something was not right. Dr. Clampitt (David's favorite doctor in the universe) was out of the office and we could not see him right away. I had planned to just wait and take him thursday morning to Dr. Clampitt, but I chose to take him to the ER instead of waiting.

Love on your babies. Life can take such a sudden and unexpected detour. just Wednesday I was getting Hope's first haircut and having a consult with an orthdontist over Kyle's teeth. Our life will forever now be B.C. (before cancer) and A.C. (after cancer). Life is precious. Enjoy your family and your gifts from God:)

Cling to your Jesus. IF you do not know Him or you have not spent a lot of time with Him lately, pull out your bible and look up some of David's bible verses. I hope to put all of the bible verses that we have been sent in a blog post when my brain is functioning better. We have had hope here in this sad and dismal place because of Jesus.

Dear friends we are humbled by God's grace and your love for our rock star. More updates tomorrow when we know more.


  1. Dear Robinson Family. I want you to know you and David have been in my thoughts and prayers. My name is Stephanie Mabe. My son and daughter go to school with David. Over the past two days I have read your blog and have been reminded and had memories of my experience that is so similar to David's. I want to share this with you. 23 years ago I was my parents little David. I was 10 years old and found out I had cancer. I was in the very hospital you are in. Believe it or not I know Dr. Kane. As I read your blog I have memories that I had long forgotten. I want you to hold on to the hope that in 23 years David will have these moments as memories. You are in the best place. UVA is amazing. I talked to my parents at length today. They have had the same feelings and emotions you are feeling at this very moment. We laughed and cried together this afternoon. I told them I wanted to jump in the car and drive to you and wrap my arms around you and David. Especially David! Your baby will make it!! God is with him and will offer him mercy, grace and comfort. I am leaving my email and phone number. If you want to talk I am here. Keep your faith, hope and love strong. God's plan is already in place. Love and prayers are with you!!

  2. Laura, We are praying very hard for all of you here in Kingsport, and we send our love. Your faith is such an inspiration, and you are such a blessing...because of your strength and love I know that you enable Mike, Kyle, Hope, and especially David to feel God's strong arms holding them during all of this. We miss you, love you, and have been praying constantly since we heard about David. I remember a conversation we had years ago about David's name...what a perfect, beautiful name. Cancer is his Goliath, and I know that the Lord is with him as he faces this fight.
    Tracy, Chris, Cade, and Chloe

  3. Dear Robinson Family,

    I have been down "Big C" road myself several times with my father, three of his sisters and a cousin. I can speak from experience that PRAY is AWESOME!!! I have contacted several Prayer Warriors and will continue to PRAY myself.

    Hugs and Prayers,
    Kelly Heaton (CMS teacher)

  4. Please know that all of your Charlottesville friends are praying for you and your family. Don't hesitate to let us know if you need ANYTHING!
    All our love,
    Lois, John and Kayti Burke

  5. Praise for a successful surgery. I have experienced the "C" word with my husband. The "C" word is just that-a word and not a sentence.
    Charlie and I have spent many weeks at UVA with our oldest daughter as she had open heart surgery there. They are amazing people.
    Charlie and I are lifting the family up in prayer. Praying for strength and comfort for all. Wrapping our arms around all.
    Tammy Doane

  6. Robinson family, I am SO grateful to hear that he is out of surgery and resting peacefully. Every time I woke up overnight you were in my prayers. I'm so glad that you have a friend in your pastor and his wife. We, too, are very blessed with such a setup and it is so very wonderful! Many prayers continuing to go up!!

  7. So glad to hear that this little angel is out of surgery and resting peaceful !!!! I am so sorry that you all are going through all this but God has a plan for this little fellow I dont know what it is but i feel in my heart that he has a plan..You all are in my thoughts and prayers and i continue to pray for you and your family that God will give you all the strength to go through this .. This goes to show everyone that takes everything for granted that you never know what road you will go down so enjoy each day and take nothing for granted .. My heart goes out to you all and David he is so precious ... God Bless you all !!!!

  8. Dear David (and family), We are sooooo happy to hear that the surgery is over and YOU are sleeping well. This is Jamie and Joshua Pike, and we have been praying and praying and praying (and more). Joshua is missing David alot in class. He says he misses David just being there, them laughing together, playing together, and "just plain old" missing him being there. Joshua said to tell David that NO ONE lost a star yesterday, even David C kept his. :) I have not got into the specifics with Joshua; he just knows that David is very sick, has had surgery, and will be gone for a while. Please know you are very much missed and MPS is deeply missing you!! All the teachers will be wearing "Team David MPS style" on Monday with David buttons and every day after that unitl you COME BACK!! MPS is just not the same, especially first grade. I (Ms. Pike) miss seeing you walking down the hall and saying "Hi" or "Sit" when you head to Mrs. Hubble's room before the bell rings. :) I just loved seeing you and Joshua sitting side by side, just being together---as friends!!! You are such an amazing young man, with an amazing God loving soul and family,and we know you will be better very soon from this "ugly bug" and come back to school BEING SUPER COOL!! Dr. Robinson and Laura..... Please know we are constantly lifting you up to OUR AWESOME GOD, and know He will sustain you through this with HIS POWER AND GRACE!! You are both amazing people to know!! Thank you for the updates, we check it very often!! We await HAPPY NEWS for David, you, Kyle, Hope, his family, and now his "extended family." we love you and miss you greatly DAVID!! SEE YOU SOON!!!
    With good thoughts, prayers, and hugs from Joshua,
    Your friends forever....Jamie and Joshua Pike

  9. God bless you and your precious sweet family! Even in your trials your faith remains strong. You are truely an inspiration to all. I will be praying for David and all of you.

  10. Friend of a friend here - Praying for you and your family. May God's Grace abound on David as he recovers.

    God Bless,