We are so grateful to have an Angel Flight lined up to take us to Boston next week. We are taking Henley to Dana Farber Cancer Institute at Boston Children's Hospital to see a group of doctors that specialize in bone marrow failure and are very knowledgable about Shwachman-Diamond Syndrome.
The University of MN has recommended that we move forward with a bone marrow transplant in the next few months with Henley. We have been praying for Henley to be healed, and this is a way to heal the problems with her blood. A successful bone marrow transplant will give her new bloodlines. She would no longer need blood transfusions or injections of GCSF. Sometime in the next week I will try to make a post on the blog that will describe more about what will happen when we move to do transplant. Life is so hectic and busy being at home that it is really difficult to find time to sit down and write. I have so many things to share, but little time to express them.
In the meantime, we will continue to be very protective of Henley. Please be understanding and respectful of our boundaries with her. We need to protect her from getting sick, as she needs to be as strong and big as possible going into transplant. With cold and flu season upon us, we will avoid public places and group gatherings in every instance we can.
We continue to be so grateful for those who have supported us and surrounded us with positivity. God has answered our prayers and is helping Henley build an Army.
