Sorry it has been so long since I have updated the site, but it has been very busy. Since I last updated we have decided to place Westin in the antibody study at St Jude. Although his scans were stable we were not making good headway at destroying anything so we decided to go ahead and do the ICE chemo. We had already made plans and we were to begin this week; however, out of the blue our doctor from Johnson City called and said they thought Westin could benefit from the antibody study. Since we had not been asking about this and had made our thoughts known that we would do ICE and wait for the antibody to get further we feel like this was a direct answer from the Lord. So, even though the study is not as far as we want it to be we are following with our heart and entering the study. This week has been full of tests and more tests before we start. Thursday night Westin was in horrible leg pain so we called and got some tylenol with codeine. Because this effects liver function I questioned our NP in D Clinic on Friday about keeping him on the tylenol with codeine since we needed those functions down at a certain number. She and the other docs have felt all along that this leg pain is due to the cells in his leg, but she went ahead and ordered an xray of the leg. To our suprise he had two places that had been fractured at some point and had started to heal, but needed to be braced or restrained from movement. I feel like this happened back in October as this is when Westin began having some problem with that leg; however, no one ever did an xray. We just discounted to some of the things that had happened over time and since he was walking and running just let it go. Can you imagine the pain he has had over this leg? Anyway, he has a boot on it from below the knee down and it is removable. He did not like the idea at first but he is doing good with it now. Our plans right now are to go into the antibody study Monday night and start the infusion on Tuesday. It will run four days for 4 hours each day. All things going okay we will leave for home on Saturday. Pray for this study and pray for our little man to handle the antibody with no side effects other than total tumor destruction!

The pics above are of Emma and Westin in the SJ lobby; Westin and Bella ( a little girl who just showed up in our room at RMH....told me her name and proceeded to paint with Westin!) Normally Westin would be objecting to this bold step from any girl......but I think he may be a little sweet on her. Her brother is a little over 2 and has neuroblastoma and is headed into transplant. It was so cute the two of them taking turns and everything........it is amazing what a girl does to a little boy!! Especially one that takes CHARGE!! (and is cute to boot!)

I pray you all have a blessed day.......Julie

The faith of a child. Yesterday Westin ate all day long, played at the beach, swam in the pool, relaxed in the hot tub, and ate at the Japanese Steak House. When we got back from all the activities Westin was sick to his stomach. He had shown signs of a little constipation during the day, but not real bad so I just left things alone. With the chemo he just finished it can cause the opposite effect so you have to be really careful about giving medicine to reverse constipation. (I know this is a wonderful topic) Anyway, he was screaming that his belly hurt. I gave him some ondansetron(zofran) and tried to get him to potty, but things just were not working. While I held him in the floor of the bathroom and dad ran to get some meds and apple juice at Walgreens I told Westin to ask Jesus to heal his stomach. He did pray and as Jesus to touch his stomach and make it better. Then I told him to thank Jesus for healing him so he did. Within 2 minutes Westin feel asleep and slept all night until early this morning around 9am. PRAISE GOD!!!!! He has eaten all morning......cookies, popsicle,pizza, eggs(just a few), and a donut. He feels perfectly fine.

So many times we have things restricting our prayers, but the faith of a child is amazing and I believe that is what God asks. To come to Him as a child. This morning I reminded Westin about his prayer and reminded him who healed him. He remembers it all.

Remember to always trust in Him and approach Him with a child like faith! IN all things we give thanks!!

God Bless.....Julie

Shew it has been quite some time since I updated, but did not want you all to think that I had forgotten. Here is a pic from Charley's Crab in Hilton Head Island. We ate outside on the veranda and the kids ran back and for down the pier. It was an interesting experience to say the least but very enjoyable to watch them play.

My parents, Emma, Westin and I have gone to the beach for a few days before we start this next round of chemo with Westin. Alli and three of her friends are down here as well, but on the other side of the island. I thought we would cramp their style but they came over here yesterday and sat out with us. I am very blessed to have four wonderful children!!

I have been really struggling lately with having enough time to do all that I would like to do ... ie., my devotionals, my prayer time, Emma's school, house cleaning, appraisals, sewing, reading, blogging, etc. The biggest burden has been my prayer and devotional time. I feel really bad when I don't get that time and even feel very convicted. However, I do spend alot of my time during the day praising or praying in short bursts, but I was feeling like that was not good enough. I read a devotional yesterday morning that set my spirit free!! It was talking about praying with ceasing and that we should be about staying in constant prayer or communication with the father. The devotional went on to say that "big" massive prayers are not necessary every day. God's want a communion with us and a walk daily with us. I know this and have known this, but in this battle that we are currently undergoing I guess I felt the need to heap huge prayers at the throne twice daily. The Lord has really been convicting me lately about some rituals that I was doing about Westin's healing. Many things I was doing (in hindsite) looked like I was trying to purchase his healing. Oh, what a huge mistake!! Westin healing was purchased at calvary and I don't need to redo. My duty is to trust and believe all that God has done. Then a step further is to live as Christ would have me live. When I look around at all the people we have come into contact with down here I am more convinced that there are many hurting people.....seeking a Savior. Lord gives us a compassion to love others the way God loves us.

May God Bless you this day.

Julie

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