Saturday, March 28, 2009
Thursday, March 12, 2009
Wednesday, March 11, 2009
Friday, March 6, 2009
Well today comes with bittersweetness. We will be taking our last dose of irinotecan low dose chemotherapy for this part of our journey and in a couple of weeks we will start with ICE....Ifosomide, Carboplatin, and Etoposide. These are three more powerful agents and have the possiblities for more side effects. Two of the agents Westin has seen and has done very well with. I just wish we could have cleaned everything up with the lower dose......but we are at peace with our decision. Well, when I say peace I mean we are not questioning the treatment. Joel and I both agree that Westin's treatment needs to move on and we want to clean this mess up. Westin does not act sick nor does he outwardly seem to have any side effects, but we both feel like he has a time bomb ticking inside of him and we want it deactivated! Our goal all along was to keep what he has at least stable or improved so that we could get on to the antibody study at St Jude. If we clean all of it up then it knocks him out of the antibody and we both feel passionately that we need to give this antibody to Westin. However, we would both like to see some reduction in the cells that are there and we are no seeing that.....so we are uping the treatment with hopes of reducing some for at least a round or two and then heading to Memphis for some Antibody treatment. All of this is just so overwhelming when a parent if faced with such decisions about their child's care. There is no defined path .... no clear set of options and it wrenches at your gut.
We have good friends at St Jude who got good results this week, Noah Burchyzk (www.caringbridge.org/visit/hope4noah) and Sam Farris (www.caringbridge.org/visit/samfarris). Noah was in initial treatment with us and Sam was further behind and has had a relapse. Noah is still clear and Sam's relapse looks better. Sam tried a different option with his relapse and it almost makes us question if we did the right option; however, we have to trust that God is leading us in the right direction. When you put your faith and trust in what you hear God telling you then we must hold on and just keep moving forward. But it is very tough.......
Today will be very bittersweet because I know the next thing that goes in my child's veins can be very harmful and cause so many toxic side effects, but ..... I know that the God that watched over him during the first 18 months of treatment and protected every organ in his body is the same God who is still protecting him. Our faith is not in the medicine but in God. So....we just lay Westin at his feet and give him to the Lord for his protection.
During the next two weeks I ask for your prayers that the Lord will restore Westin's body. Give him back strength that he lost during a recent virus. Restore chemical balances in his body. Revive his marrow and give him all that he needs to walk victoriously through this next leg of the journey. Also, lift us up as this is some the toughest decisions we have ever made and we desire to be following what the Lord is telling us to do.
The pic is from this week in the new St Jude Clinic in Johnson City. It is very very nice and Westin loves the new hospital. Of course he calls it his hospital.....most kids don't even recognize a hospital, but these precious children have learned that it has become a part of their daily life....mixed emotions for us parents.
Have a very blessed day....Julie
Wednesday, February 18, 2009
God's Favor
Tuesday, February 17, 2009
The title of my blog is peacefully awaiting and I would like to share with you why I chose that title. Of course I went through many titles that were not available like Standing Still, In His Grip, etc. None were available. Then it came to me, peacefully awaiting? Hum......that may be a little misleading. However, it is a goal that I strive for everyday. A peaceful awaiting for the complete manifestation of my son's earthly healing. A total reliance on the Holy Spirit to carry the burden and for me to leave it at the foot of the cross. I would hope that by now I would have conquered this better than I have, but I have to say that as I walk this journey I am learning more and more everyday. It is a total dependence upon Christ. The Bible says that we must cast all our fears upon Him. So when we fear (yes Christians do fear) we have a place where we can go and cast all our fear/worries. Cast - means to hurl: throw forcefully or shed: get rid of. So we must get rid of our fear/worries. Jesus carried those burdens to calvary and conquered those for all of us. I sometimes find myself angry because I let fear creep in when we get to this stage of Westin's journey and I feel less "christian" and I get angry with myself. "I should know better" I tell myself. Then I have well meaning people say, "it is only natural", which is exactly what I do not want to be "natural". I want the living Word of God manifest in my life daily and to do that I have to operate above the "natural" man. But when people do say "it is only natural" that is my wake up call....."julie, you are operating in the flesh....not the spirit.....remember you must cast all your fears upon the Lord and let Him carry the load." When we do this and begin to operate in the fullness of what God has intended for us then we can truly peacefully await!!
May God bless you all this day.