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.