After a long tiring week, we have made it to Utah. We were given a lot of information from Dr. Escolar, the neurologist, and Dr. Paul, who does bone marrow transplants.
William is a candidate for a transplant. However, his motor skills, regardless, will continue to decline. Basically, he will look like a quadriplegic, but will be able to feel, although with management of medications he will not be in pain. Motor skills also involve the mouth and ability to talk.
William's disease is progressing slowly. Therefore, he will continue to be able to see, hear and have some neck movement and very little arm and leg movement until his 1st birthday. At that time, they say, he will start to decline. He may live until he is 4 or 5, but will spend those last years in a vegetative state.
With a transplant, because his symptoms began when he was almost 3 months ago, he will still lose all motor skills. From what I understand, Krabbe Disease affects the peripheral nerves and that damage cannot be stopped nor fixed. Actually, any damage at this point cannot be reversed regardless of transplant. What the transplant will preserve is his sight, hearing and his receptive language skills that are still intact at the time of transplant, which if we committed to doing it today, would not be for another 4 weeks. In other words, if he would lose all neck control in a month, he will not get that back. He will communicate through an assistive device such as a computer. Life expectancy without transplant, Dr. Escolar said, would be 4 or 5 years, and the last 3 or so years he be in a vegetative state. It doesn't seem real to be writing this; they don't even make movies about this because it's so sad.
Life expectancy with transplant is about 15 years. There is a 10% fatality rate due to the transplant.
The risk of infection during and after the transplant is high. He will be on chemotherapy to remove all of his bone marrow, he will be in isolation. If we commit, we will fly back to Pittsburgh on Saturday, and stay there for 3 to 5 consecutive months. The transplant is not 100% successful. There is a chance nothing may change and we would had spent a lot of precious time with our Little in the hospital...this is a decision I wouldn't wish on my worst enemy.
We will make a decision by next week. We are beyond exhausted, currently waiting for our luggage at baggage claim at midnight and are in no way shape or form capable of making big decisions. We ask for your prayer to help us make the best decision for our family. There isn't one thing in this world we wouldn't do for our son. He is a true blessing and we are honored to be his mommy and daddy.
Again, apologizes for the typos, as it is late and I'm typing on my smartphone with two fingers.