Over the past several months Chris and I have spent countless hours doing research and meeting with medical experts about Crewe’s condition. Despite our efforts, we are not any closer to finding a long-term solution. Here’s what we know:
- Crewe’s case of cystic hygroma is considered severe
- Most of his cysts are classified as microcystic
- Microcystic cysts do not respond well to any kind of known treatment, including OK-432
- Cysts may increase in size and number anytime the body goes through a growth spurt or hormone change (puberty will likely be trouble)
- Surgery may “de-bulk” his face for a period of time, but the cysts will grow back
- There is a significant risk of damaging facial nerves with surgery
- Sclerotherapy is somewhat effective at damaging the abnormal tissue, and therefore, is somewhat effective at preventing the growth of new cysts
- The secondary scaring that sclerotherapy causes could potentially make surgery more difficult later in life
- One of the sclerosing agents used for microcystic cysts can cause tooth damage; the other can cause nerve damage if it comes in contact with a nerve
In the spirit of doing the best we can with the information we have, we have decided not to pursue surgery in the near future, but to aggressively start sclerotherapy treatments again. His next treatment is scheduled for December 1 at Phoenix Children’s Hospital.
Our primary goal is to relieve pressure around the airway so that Crewe can begin to make sounds (his laser treatment last month failed to help him make sounds) and ultimately get rid of his trach (we are likely many months, if not years away from that). The emphasis is on setting him up for successful speech later in life.
We are not discouraged. We feel the Lord’s hand in our quest to understand Crewe’s situation and make decisions about his care. For reasons that we don’t fully understand at this time, we know that this experience is important for Crewe and our family. We give thanks everyday that we have Crewe in our family.
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2 comments:
Camille, this post makes me cry. Not at all because of Crewe's situation but because of the faith and grace you are exhibiting in dealing with it. He is blessed to come into your home with loving and patient and faithful parents. Your boys are so lucky to have you. Our prayers continue to be with you.
(On a side note, I got your ADORABLE baby announcement today. It's so cute!)
Me too! I second Monique's comment. You guys have been a true example of faith during this, and that is so inspiring. Sometimes it is so difficult to understand trials we are given, whatever they are. Crewe's spirit shines so bright, and he clearly is a special boy. Happy Thanksgiving to you all!
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