Unexpected News

Friday morning Luke and I both woke up wondering if and hoping Thursday was just a bad dream. It didn't take us long to realize it wasn't. We got some news that we were not really expecting and definitely didn't want to hear. If you remember we went to Delaware in March and saw an allergist/immunologist that was recommended after the liagese 4 deficiency was discovered in Landen's DNA research. They ordered extensive labs to be done at Duke. We had our first appointment after the lab results were back in April. That appointment was basically continuing the initial evaluation that was started in Delaware and more blood work was done. The doctor mentioned the possibility of a bone marrow transplant and told us she would like us to have an appointment with the doctor that specialized in that as well as see her again. Those appointments were yesterday. The bone marrow transplant doctor was the first to come in. He talked with us almost an hour and explained things very well. He said according to Landen's blood work his red blood cells, white blood cells and platelets are all low. When all three components of the blood are involved that means there is a problem within the bone marrow. His counts are not extremely low but have began a pattern of being lower each time they are tested. This leads the doctor to believe that with time his blood counts will gradually get worse. The only solution to this issue is a bone marrow transplant. He said "it is highly likely" Landen will need one. Landen's CBC (complete blood count) was repeated  yesterday and will be checked every 3 months. This will help determine if a bone marrow transplant is indeed needed and will help determine more of a time frame. Another factor is the donor. The best possible donor is a sibling. The risks are lower and success and recovery are greater if a match is found in the sibling. Brayden was tested while we were there to see if he is a match. We actually all unexpectedly had our blood tested yesterday. It's such a blessing to see the Lord's hand evident in our lives. Brayden is usually not with us at appointments but "for some reason" we just thought he should be with us that day. Now we know why! :-)

The doctor explained that a bone marrow transplant is a very lengthy process. Many factors make the process different. The donor being a huge factor. If the donor is a sibling there are less risks involved, there is a greater success rate and the recovery time is much shorter. We were told to be thinking of how this would change our lives. Landen would be in the hospital throughout the entire process. First of all he would have to do chemotherapy to kill all of his bad cells. Because of the liagese 4 deficiency Landen is assumed radio sensitive so he cannot receive the normal radiation that is involved. He also would not take the regular doses of chemotherapy. He would receive a smaller dose. If Brayden is a match and the bone marrow transplant takes place the minimum time in the hospital is 6 months. If Brayden is not a match and a donor is found the time in the hospital would probably be longer. Landen would receive blood transfusions daily to build the new cells, be on antibiotics and different medicines and have a feeding tube.

As you can imagine this was very difficult to hear. We are still processing it all. It is very overwhelming. Most of it doesn't make any sense. There is A LOT that we don't understand. If you are around Landen you know he is so full of life and energy and is very happy! His immune system seems to be working fairly well right now which is encouraging. He doesn't get anymore sick than the average child which is why I think it's so confusing. You would think someone that needs a bone marrow transplant would be very sick. The doctor explained that it is much better and more successful to do the transplant when Landen is well. He said you do not want to wait until he is sick. The liagese 4 deficiency affects the immune system. Because of that and his blood work the doctors think he will get more sick with time.

So, what's next? Right now we wait for the test results to come back. We are praying and asking our family and friends to pray that his CBC levels will be elevated or the same! We know that God can overrule and He has the final say! If his CBC levels are lower we are praying and asking prayer for Brayden to be a match. The doctors mentioned if Brayden was a match we would need to consider moving forward with the transplant. If he is not a match they suggested taking our time and monitoring his CBC  levels every 3 months and making sure he is not having any infections. Also, the next thing would be a bone marrow study that would involve Landen being put to sleep while they remove a bone marrow sample. We also plan to talk to Landen's doctors in Delaware. We are aware of I believe 2 other patients that have the same type of PD that Landen does that have already undergone a bone marrow transplant.

This is too much to take in and process. However, we are placing our faith in the only One who knows what our future holds. We have faith and pray that Landen may never have to go through this! We are hurting, confused, scared and mentally exhausted! Although we were surprised by this news God was not. We will trust Him for He alone knows best! We have been reminded of many songs and scripture that brought so much comfort to us when Landen was diagnosed with PD. This feels a lot like that time. It's really hard to put into words what we're experiencing but right now we are taking one day at a time! I don't know how people go through hard times without the Lord. We are so thankful for our family and friends who have expressed their love, support and prayers. It means the world to us to know that you care and we will not go through this alone.

The boys were SO good!! Having to hang out here for 5 hours and getting a late lunch is no fun!!