Hey Everybody! I am sooo happy right now. As Anna Beth said when I picked her and Kevin up at the airport – We are a family again!!! She squeezed me so tightly…with her arms and her legs! It was a full body hug! Thank you so much for flying them out here. Not only are we able to have some time together, but Kevin is taking Caleb to the Clinic tomorrow so he can learn more about how the treatment is delivered.
Speaking of the treatment, here is a quick explanation. Dr. Burzynski discovered that healthy people have a abundance of tumor suppressing peptides and sick people (people with cancer) have very few. He found a way to synthetically produce these peptides and delivers them through a continuous IV treatment.
Caleb gets 6 doses per day, every 4 hours. As the medicine is gradually increased, the length of each dose will take longer. When we reach our target dose (in about 16 days), Caleb’s dose will take about 2.5 hours to dispense. The lines can stay connected in between doses and trace amounts of medicine trickle in to keep the veins open. All of this is with minimal side effects…no hair loss, no sores, etc. It is a non-toxic treatment. The medicine has a high sodium content, so he is now on a low sodium diet along with everything else. Pretty soon he is just going to be eating card board!
The hardest part for Caleb is going to be that he has to carry this around with him all the time. We put it in a pretty small backpack, but the bags of fluid and the pump itself are pretty heavy, so it isn’t very much fun to carry around. As his strength improves (which should happen if the meds are working) that should get easier.
The reason we have to stay here in Houston for now is because I have to train on how to give Caleb the meds once we get home. I have to prep IV bags, draw blood, program the pump, change tubing, monitor intake and output, etc. I’m getting an education I never thought I would receive! But, the good news is that I am catching on pretty fast, thanks to the homeopathic meds Caleb was already getting by IV through his port by Dr. Bergeron in Roswell, which we can continue by the way. Yay!
All in all, we are waiting for Caleb to get stable enough to go home, which should take another week or two. By then, I will have trained on how to give the meds, Dr. Scheussler has graciously agreed to monitor Caleb from LaGrange, and I will have found a good place to run blood work and get good MRI’s that we send to Burzynski.
Caleb will have monthly MRIs. We should know if the meds are working by the 2nd or 3rd MRI. So, keep the prayers coming. Kevin and I agree that we feel God has led us to Dr. Burzynski and we have confidence in his treatment here. Even if the treatment is not successful, we believe we have made the right decision.
Thank you everyone, sooo much for all you are doing for my family. Seeing Team Caleb in action is a miracle in itself! God has provided us with blessing after blessing from people we don’t even know. Oh, Kevin and I have talked with 3 different Congressmen about Caleb’s FDA approval – so unreal! Everyone is doing everything they can to help.
Thank you for getting Kevin and Anna Beth out here this weekend, I missed them so much. I wish you could see Anna Beth with her brother. She holds his hand everywhere they walk and does her best to take care of him and entertain him. She is one crazy baby girl! I’m not very good with pictures, but I’ll try to do better. I don’t have one single picture of Caleb at the Clinic because the whole time I am there I am busy training and asking a zillion questions. He has already get every nurse eating out of his hand, though. They all have “Pray for Caleb” pictures and hug on him when he walks in the door.
I’m rambling, but wanted you guys to know what we were up to. No major plans this weekend, Caleb still has pretty low energy, but Anna Beth and I are going to have some girl time tomorrow.
Thanks again, everyone. We love you and continue to be overwelmed by your generousity! “I shall not die, but live and declare the works of the LORD.” Psalm 118:17
