Joel and I have a huge decision to make. We've already had to make huge decisions for Caleb in his short life. When my water broke, we had to decide if we wanted to terminate our pregnancy or to "try" and give him a chance and go on bed rest, not knowing if he'd live after he was born. When Caleb was born, we had to decide if we wanted "everything done" in order to save his precious life. We've had to decide which therapies, doctors, specialists, and schools to send him to. But none of these things compare to this new decision.
I don't talk about it much here, but most of you know that Caleb has a very rare immune deficiency disease. His white blood cells are useless and therefore his body cannot fight off infections on it's own. We have learned that he has the worst form of this disorder and has zero ability to fight infections on his own. He has to take antibiotics and antifungal medications every day to help minimize the chance of him getting an infection. I give him shots 3 times a week to help boost his immune system.
With Caleb's recent CT of his lungs, his doctors are telling us that he needs a bone marrow transplant. They just do not feel that his lungs will be able to tolerate an infection. They feel like we need to rid his body of this disease since it puts him at a huge risk for an infection(s). When Caleb was first diagnosed, his docs told us that bone marrow transplants are done as a "last ditch effort" for these kids, meaning they continually get infections that cannot be cleared up. But, now there has been a shift in the the theory (science/medicine is constantly changing) and several transplant have been done each year for the past few years. (England has been doing transplants for kids with his disorder for 10+ years and are urging the US to follow their lead.)
Since chemotherapy is also very hard on the lungs, we are put in a tough position. The treatment (chemo) that could cure him of his disorder, can also severely damage his lungs and we know that he has decreased lung function already. We do not know what kind of lung function he'd have after a transplant. On the other hand, he WILL get an infection at some point, and we just don't know how well (if) he will tolerate it. See why we are struggling with this decision??
I have been in contact with doctors all over the US about this decision and they haven't made it any easier. There's no telling how he'd do with a bone marrow transplant. He might sail right through and have no problems, or he may have life long issues afterwards. He don't want to be trading one "issue" for another. And it's hard to overlook the fact that there have been a few little boys who have died after a transplant. It's just so hard to imagine putting Caleb, who looks and acts completely healthy, through something like this.
He does have a couple major things in his favor for a transplant. He's young, very active and has never had a major infection. AND, the little man that we weren't going to have, our miracle baby Isaac, is a perfect sibling match for Caleb. There's only a 1 in 8 chance that siblings are a 10/10 match. And to think we weren't going to have any more kids after Caleb....this is surely a blessing from God.
We have traveled to Cincinnati for a 2nd opinion, and they too said that he needs a transplant sooner than later. They wanted to try a new protocol on him, which is not something we are comfortable with. Duke University said that we should come there ASAP for a transplant (without seeing him, only his records). Through all of our research/contacts made we have decided to go to the best of the best for our 3rd and final opinion. We will be leaving tomorrow for Houston, TX and Caleb has an appointment at Texas Children's Hospital on Monday.
Will you please pray for us? Ask God to give us the wisdom and knowledge we need to make such a big decision? Of course we only want what's best for our sweet boy. He's been through so much already, and putting him through something so huge is not something we really want to do. But in the same breath, we also don't want him getting a nasty infection that he can't get over. And we want him to be able to do things "normal" kids do like play in sand, swim in the lake, go to the park, dig in the dirt, collect shells at the ocean (his dream), etc. I pray we can make the "best" decision because we have already learned, there's isn't a "right" one.
