Eyes on the prize

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 next 4 weeks. Without antibodies you are without an immune system. For the first two years of George’s life he was not able to fight off bacterial infections due to his neutropenia. Now for the next 6 months of his life he will not be able to fight off any viral infections. He will still need to be closely monitored with three times a week labs and then also we will need to keep him away from public places and sheltered from any sicknesses. Terrible timing considering winter is typically the worst time of the year to get sick. I lay awake most of the night having not only a pity party for George but one for myself. I honestly thought that at the end of November when he reached his day 100 that he would be healed and life would be somewhat normal again for him. But like I said previously, this is not my plan but it is God’s plan. There is a bigger picture for George and I am not suppose to understand it. I am just suppose to trust that plan and know that it is for his good. I am refreshed in knowing that this too shall pass. We will get through this. God will not only give George the protection and strength, but also give it to me. I just get lots more alone time with my boy now and that is a gift right there in itself. We have done the seclusion before. We know how to make it through. We have been going to the hospital almost daily, so we know we can keep on doing it. We know that our God loves us and will carry us another 6 months just as he has for the past 2 and a half years. 6 months from now will be April. George’s birthday is in April. What a celebration that will be indeed. Until then, we keep our eyes on the prize which is Gods promises to us and George’s complete healing. And as for all the staff at nemours 8th floor and Weaver 4 at Wolfsons, you can’t shake us that easily. We are still yours from now until April. Looks like I’m going to have to up my game on bringing treats to them so they don’t get sick of us. Fixing my eyes on the Lord. Trusting His plan. Waiting patiently on the day when this is all just a distant memory and George is a healthy and thriving little boy. Thanking God for all that he does for our family and for George.
For our light and momentary troubles are achieving in us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:17-18.