Tuesday, November 22, 2011

Long Day but Big Smiles

Today has been long with the oncology consult, PT session, and various other consults and meetings. Let me be clear that with the oncology consult we learned no new news that was hard or sad, but for some reason all that information fell on me like a wet blanket. I felt suffocated with grief as I heard survival rates and all the potential nasty side effects of the chemo. They must give us all this information, but weariness and fear crept in today.

Then David had a long and hard session with PT and OT. They really really push him hard to get out of bed and and walk. It is really hard to watch him beg to go back to bed. I know they are doing their job, but it is hard on a Momma's heart:) Then after the drama of a long oncology consult and a grueling PT session the music therapist walked in and made my boys day!!! Check him out playing that drum.

Then he got to play her guitar and as you can see my boy rocked it!

He has been full of himself and we have gotten toys out today and played. Here he is with his new Toy Story gun:) We have played Little People and he spent a lot of time looking at our Disney scrapbook.

David got lots of fun gifts in the mail today and he got this cute pillow pet from Kari's Heart Foundation. He loves his new frog pillow pet and it is a perfect sized pillow for his wheel chair.

He has been awake all day with no pain medication. He is such a brave, strong boy. He has been out of the bed all day too in his wheel chair to the recliner. His spunk and sass are back and we love it!! He has called lots of people on my Blackberry tonight too!

I have gotten so many calls and texts today and just know dear friends that I felt your prayers and love. The Lord got me through that long hard meeting today. I am still blown away that today I was meeting with an oncologist and this time last week I was snuggling in the bed with my sick boy who I thought had a virus.

I guess exhaustion and emotions took over today and I had to realistically face what we are facing over the next 8 months of our life. Despite the challenge of the day my faith is not wavering because I know that God is with us. The times that it has been the toughest here is when I have literally felt his peace wash over me. He is here with us and we are clinging to his promises.

I wish I could wave my magic wand and make these lung lesions disappear, but I can't. All I can do at this point is cling to my Jesus, nurse my little boy, and give God the glory every step of the way because He has been so faithful.

You often hear people question how a God could let this happen to a precious child like David. I refuse to go there because in this sad place is where I can see glimpses of God's grace and mercy. Friends there have been moments here that have been so hard that I know that I only got through it because of Him. Mike struggled so much during the surgery that I know that our Jesus was holding Mike's hand and gently rubbing his back. God has orchestrated each and every caregiver and doctor that has worked with us.

So for tonight we are holding our own. We have another meeting with a nurse from the oncology team to further go into detail about our chemo regimene. Before we can start chemo; however, this lymphatic fluid must stop. I know that our length of stay here is going to be determined by that factor. We feel like we will get our first round of chemo before we leave and then we will return for five additional treatments.

After the 6 total treatments, he will have another scan to determine if the lung lesions are responding to the chemo. Pray so hard that they are responsive to the chemo.

So we are all wiped out tonight and going to try to get to bed early. David has entertained us today with his spunk and his spirit. It has been fun to pull out toys and play and read with my boy. Moments of normalcy are precious around here and now that he is so unplugged except for the port-a-cath I can actually snuggle in his bed with him. If he was rotten before this he is even more spoiled now!!

Keep the faith and prayers going my friend. Our Rock Star has a huge fight on his hands but we know with your love and the faithfulness of our Lord we will get to the other side. Good night from Party Central! Rock on!


  1. My heart breaks as I sit here and read these words. I cannot begin to imagine how terrifying this has been. Please know that we are thinking of and praying for each of you. God will lift you as only he can. Hugs from the Hungates!

  2. Hi we don't know you personally But we do keep up with your story And think about you often My husband is a soilder in the Army has been deployed numerous times and He said That little Boy is BRAVER than anybody I have ever seen and I have seen some bad stuff He had a special needs sister so this story touches him even more He can't get over how that handsome little boy still has a Smile on his Face after all he has been through and going through We will keep you in a prayers always Please know that He is a HERO to this soilder that he doesn't even know we are heading to Va Saltville from Ft Campbell to spend the holidays with our family and PLEASe know you and your Family is in our hearts and that BRAVE Little Man God Bless You All