Landen's Bloodwork Results

The Immunologist from Delaware called Luke and scheduled a phone call to discuss Landen's blood work results with us on October 17th at noon. We tried to stay positive and didn't worry too much but at the same time we had a feeling the results weren't good. Luke was preaching revival for his Dad in Morehead City so we were there. We had just gotten to the church for a prayer walk when the phone rang so Luke's parents watched the kids and we parked to take the call. I grabbed my Bible notebook and we listened as Dr. DeFelice went over the results. She said that his white blood counts were trending down and they were lower than last time. His absolute neutrophil count was 740 which is low. They want it to be above 1000. His lymphocytes have decreased. His T cell count was 248 which is low, which means he is at risk for certain lung infections. His B cell count was low. His immunoglobulin count was low. His IGG count was low. His IGM was undetectable which affects his ability to fight infection. These results mean his immune system is failing and it's not functioning as it should. The doctor said it was time for Landen to have a bone marrow transplant. She said she imagined it would be within a few months and referred us to our local children's hospital. She also gave us some precautions to follow to try to prevent Landen from getting sick. She offered her support in any way we might need it and said she would be praying for Landen.

We were shocked at these results. Just by looking at Landen you would never know that he is sick. It's almost as if his blood work results belong to someone else. Although the doctors had predicted this I never fully accepted it and certainly didn't think it would be this soon. After we hung up the phone Luke led us in prayer. As we called out to God and cried together we certainly felt the Lord's presence and peace! I'm so thankful that we can call on Him anytime about anything and He's always there! We know that the Lord doesn't make any mistakes and that if this is His plan for Landen's life He will carry us through every step. Ultimately, Landen doesn't belong us, he belongs to the Lord and we know we can trust Him because He loves Landen way more than we do! I am so comforted by that thought because I know we love Landen more than we can express but to think God loves Him even more is amazing!

We were able to get an appointment with Dr. Patel the following Monday on October 24th. He is the immunologist at Levine's Children's Hospital that the Delaware doctors referred us to. He is a great doctor and we are very pleased to be working with him. This appointment was a typical initial evaluation. He went over Landen's history and examined him. He also had some blood work done. We were hoping to learn more about the transplant but found out we needed to see a hematologist next to get the actual transplant process started. Dr. Patel referred us to his colleague Dr. Huo who he works closely with. 

We met with Dr. Huo and his team on November 16th. He is also a great doctor and is from John Hopkins. We were glad to hear that, knowing he is one of the best! He took the time to explain everything about a bone marrow transplant and was very thorough and clear. He reviewed Landen's history and diagnosis with us and answered all of our questions. The appointment went very well. Overall it was very positive. He gave us the blood work results from Dr. Patel and explained that his neutrophil count has gone back up. This was very encouraging as it means the transplant is not as urgent as we originally thought. More time to plan and prepare for the transplant will be very helpful. In the meantime he will be monitored very closely by his doctors and will have many tests and appointments. Hannah Grace was tested that day but we also learned that thanks to the advancement of technology immediate family members can be a donor even though they may not be a perfect match. We will have to wait for Hannah's results and then the doctors can determine who is the best possible donor. If you haven't been following our journey we found out in 2013 when the doctor's first mentioned a bone marrow transplant that Brayden is not a match. The biggest issues right now are keeping Landen well and his blood counts remaining steady until transplant. We have to be very careful with crowds and sicknesses especially at this time of year. When the transplant will happen is based on many factors but any changes in his health or his blood counts could make the transplant more urgent. The doctors would like to get through flu season to lower his risk of infection while in the hospital. So right now an estimated time frame is April or May. 

We would appreciate your prayers during this time. We are so thankful for the love, support and prayers from our family and friends. We have been so blessed! :-)

Needless to say life is a little crazy right now. At times it is hard. It's hard to think about everything Landen has to go through but we are trusting God's plan. It's amazing to see the ways God is already working!! When Landen was diagnosed with primordial dwarfism at six months old the Lord used a few special verses to help us through that time. One of those verses was Deuteronomy 31:8. The Sunday after we found out Landen needed the transplant Luke was sharing in his sermon about how the Lord led us to this verse. Well the Bible notebook that I grabbed to take notes on from the doctor had random Bible verses at the bottom of each page. It hit me and I immediately turned to that page and you guessed it there it was again...

"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 is our hope, our comfort and our strength. We don't understand what God is doing but we know we can trust Him. We know that He is good. We know that He will be with us every step of the way!