Test Results

If you've read the unexpected news we recently got you know we've been waiting on some test results. Landen had a CBC to see where his blood counts were and Brayden was tested to see if he is a bone marrow match for Landen. The bone marrow doctor called me the day before we left for vacation and told me that Brayden is not a match for Landen. However, they had already checked the national bone marrow registry and found 2 or 3 matches. The doctor sounded really positive about the matches. He said if we need to go forward Landen can have a transplant because of the discovered matches. He also told me that Landen's white blood count was okay right now and suggested that we have a CBC on Landen every 3 months. If there is a drastic change in his white blood count we would need to move forward with the transplant. He also suggested that we follow up regularly with our immunologist at Duke. We are scheduled for an immunology appointment on July 22nd.

After the unexpected news we were praying specifically for two things. First, for Landen's CBC to come back normal, elevated (his platelets were low and his white blood count was low, we wanted those to be higher), or the same. Secondly, we prayed that Brayden would be a match because the doctor actually said to! Both doctors, the bone marrow doctor and the immunologist, said that the ideal scenario would  be for Brayden to be a match because the transplant is more successful and recovery is better. However, they also said if he was a match we would need to seriously consider going ahead with the transplant. God answered both of our prayers, one with a yes and the other with a no. We are so thankful his CBC looked a little better and his platelets and white blood counts were both higher than when they were last tested!! Praise the Lord!! We will never know or understand all of God's ways on this side of heaven however, we do know that His ways are higher than our ways and He knows best because He sees the whole picture! We have faith and pray that Landen will never have to have a bone marrow transplant. We like to think that maybe Brayden is not a match so that we would not go forward with the transplant just yet.

We are encouraged with the results and feel like it's good news. The plan right now is to wait on the transplant, have Landen's CBC checked every 3 months, and see the immunologist at Duke. At the Little People of America conference we were able to speak with Landen's geneticist and he said we were doing the right thing by waiting. He said Landen's body will tell us if he needs the transplant.

Landen is in the process of receiving a series of shots. In the blood work that revealed all of his blood counts are low, it also revealed that Landen's body does not make the antibody to fight off the bacteria that causes pneumonia, bronchitis and several other illnesses. He is getting the vaccine to hopefully help correct this issue. Then he will be tested to see if he can fight off the bacteria once he has received all of the vaccines. 

Our geneticist in Delaware is also encouraging the other 2 LIG4 patients with PD to have the immunology work up that Landen did. We know one of them is about to have it. We are hoping this will help provide more insight. It's really complicated because he has two rare diagnoses but he has one because he has the other. So in a person with  just LIG4 they would definitely need the bone marrow transplant but with his PD it changes things. This is all to the best of our understanding! It is really confusing and hard to understand and explain, but this is where we are right now! Please continue to pray that Landen will stay healthy (because of the LIG4 deficiency his immune system is compromised), that his CBC's will be normal and for wisdom.

Thank you to all of you that have let us know you are praying for us! I can't put into words just how much it means to us to know how much you care. Also, we have been blown away by the number of people, even some we don't know that well that have offered to be tested as a donor if needed. We're speechless at the thought of such kindness and extremely grateful!! As always, I'll keep you updated as new information develops! :-)