Georgie’s Journey

George had his first treatment with the new medicine yesterday. He did great. The hours flew by and we were kept busy the entire day with fun. Wolfie theWolfson hospital mascot came for a visit. We dressed up like Batman and walked around the floor waving at all the kids in their rooms. We trick or treated at the nurses station and watched a few cute movies. It was a very pleasant day stay. At around 8:30pm George was awakened  by himself throwing up. He continued this all night long as well as terrible diapers. The side effects from his medicine yesterday listed these as possible side effects. Welp, they happened. A lot. He seems pretty tired and a little lethargic this morning but I’m not sure if that’s from the medicine or from the lack of sleep. It’s weird because throughout all of his chemo and all of the other medicines he has ever been on, he has never gotten sick. Not at all. So this was a little sad to see for him to go through. We have an appointment at 1:30 today so we w...

Yesterday was an anxious day leading up to a reality that I did not want for George. His hemoglobin at his appointment actually held but with that they also did not improve. We were able to leave without a transfusion and were told we would get a call to see what the plan was going to be for his new medicine. Well at 8:30 last night I got the call from his doctor letting me know that George would indeed be starting a new plan to get the antibodies under control. Even though his hemoglobin held, there was also a rise in the counts on another marker which shows how hard his body is trying to keep up with making new hemoglobin. This should not still be happening if the steroids were working how they had anticipated. So this was why they made the decision to start a new plan of action. Tomorrow George will check into the day hospital and begin an 8 hour IV drip of a medicine called Rituximab. This is a drug that will kill off all of his antibodies. He will receive this once a week for the ...

Well, George’s hemoglobin held. Can we get an Amen!!! Thank you Jesus. Praise the Lord. His hemoglobin was at 10.1 this morning. Deep sigh of relief. We do not know what Mondays labs will show so the new treatment is not off the table but we are free to enjoy our weekend free from the stress of impending problems. We serve a mighty God. All praise to Him for continuing to protect and heal George. Keep on battling those antibodies buddy. Your hard work is paying off. And the Lord, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed. Deuteronomy 31:8

This morning George’s labs showed two things. First they showed that his hemoglobin held at 10.7. His platelets are up to 115 and his ANC is 5500. All great things. Rejoicing in this great news. The test also showed that his antibodies were up too. Which is what is eating away at his hemoglobin. His body is working so hard to keep up with the rate of destruction that the antibodies are causing. We go back on Friday for more labs and if his hemoglobin has dropped anymore then he will have to start a new medicine. This new medicine would be administered weekly and each treatment takes 8 hours. This would go on for a few months. It also would be killing his entire immune system which would put us back on total seclusion again. On top of this treatment he would still be going in for daily labs for them to keep a close watch on him. Now this is not at all what I want for George. This would not be my choice for his journey. George’s journey however has never been and will never be my choice....

George’s counts came back pretty good this morning. His hemoglobin has dropped down to 10.9 which isn’t wonderful but it isn’t bad either. His marrow is producing red blood cells like crazy so they said eventually his antibodies won’t be able to keep up with killing them and basically will throw in the towel and give up the fight. They are going to wait another week before deciding whether or not to put him on the new medicine to help with the anemia. His doctor seems to think he can beat this with the help of the steroids so he wants to wait to see how this week looks as far as counts. His platelets are back up to 90 which is a huge praise. They had dropped back down to the 40’s last week. His ANC is off the charts high. This is so crazy and wonderful. That was always the only count that I would look at with his appointments. So just thinking about how his disease has been cured is really surreal. He will go into the hospital tomorrow for his monthly IV treatment of heavy antibiotics ...

This morning George’s hemoglobin came back at a whopping 13.9. Say what??!!!! That’s right, just when he was to be put on yet another medication to try and fix the anemia he goes and blows everyone away with his awesome counts. Rejoice in the Lord always, again I say rejoice!!! We never met with the drs to discuss the results but we will meet on Monday and see if this indeed means that the anemia worked itself out. Just as always we are prepared to hear something totally different on Monday but for now we are believing that this is the case and that is enough cause to head into the weekend heads held high and arms raised even higher thanking our Lord for this wonderful news. Tomorrow George has his photo shoot for Wolfson 55 patient of the year. Hopefully the steroids won’t kick in until after the pictures have been taken. I’m not sure if “temper tantrum” is the look they are going for. Since the transplant has begun only a hand full of people have seen George in person. In the past fe...

Today at George’s appointment we were given the great news that he didn’t need a transfusion today. His hemoglobin went up to 13.5 since Monday. Praise the Lord! Also, his blood pressure is up so he will have to increase his blood pressure medicine but hopefully this will all work itself out when he comes off of his steroids in a few months. He needs some prayers about his hemolytic anemia. They do not think that the steroids are fixing the problem so on Friday they will be starting him on another medicine to see if this will correct the issue. If that doesn’t work then he will have to be put on a drug that will wipe out his entire immune system for a few months. That would be terrible. We do not want that. So let’s pray that Friday’s blood results come back at with a strong hemoglobin count so we can start putting this issue to bed. God can move mountains. Please heal our boy. His bone marrow is working wonderfully, too good actually. This is why his antibodies are attacking it. They ...