Here is a copy of the email that Chuck sent out on Friday.
Hi All,
Until now, Dian and I have been sending separate emails to different groups of people (I have my own email address, she has her own one, and we have a joint one). To make things simpler for everyone, from now on we will just be sending to one big distribution list, and we will be using our joint email address.
Thank you so much to all of you for your prayers and support! Words are not enough to express our appreciation. We are truly feeling your prayers. This has been a difficult and extremely emotional week for us and we know your prayers have really helped us deal with it all.
Here are the highlights (I was going to cover all of it in as much detail as I understand, but I finally decided that not many of you, if any, would want to wade through a mile-long email. If any of you would like more details about any of this, we’ll be happy to give you as much as we know/understand):
· Scott does have McCune-Albright Syndrome.
· This syndrome can cause many problems in different parts of the body.
· Scott has:
· A benign tumor on his pituitary gland.
· An enlarged Thyroid gland.
· Bone lesions on his skull (which cause deformities in appearance and can affect the facial nerves). He might have them elsewhere on his body. A full-body nuclear scan will be done next week to find out.
· Early puberty.
· His large size is being caused by this condition (possibly the tumor on his pituitary).
· While the tumor is not cancerous, it is still serious. Left untreated, it could cause blindness and/or deafness, and his dramatic growth rate would probably continue, leading to gigantism, which would likely severely reduce his life expectancy.
· The tumor is slow growing, so this is not an emergency situation where they have to operate tomorrow. We have enough time for him to be thoroughly examined so the doctors will know exactly how this condition is impacting him and a plan for helping him can be made.
· There is currently no cure for this condition, but there is at least one treatment for it in Europe, and clinical trials are being conducted here in the States, so one of these might prove helpful for Scott.
· While the tumor and skull lesions could probably be treated surgically, the neurosurgeon would prefer a non-surgical approach. He is referring us to an Oncologist to see if they have any new treatments that might work for Scott.
· We still have many tests and consultations to go.
Praises
Scott is not going to die from this, at least not in the short or mid-term. His life expectancy could be shortened by this condition, but we aren’t going to lose our precious guy to this in the next week, month, or year. When we first heard “tumor in his brain” from the doctor, we of course feared the worst.
In my 1st email, I mentioned being angry with God. In the last few days, that anger has pretty much disappeared, even before we learned the tumor wasn’t going to kill him. I can only attribute this to your prayers and God’s work in my heart. I still don’t understand why, but at least I’m no longer mad at God.
We have been getting generally quick responses on getting the referrals and getting appointments.
We are able to see that God is in control. We still don’t know where this is going or exactly how this will end up, but we are trusting Him for the outcome.
Prayer Requests
· Although we have been getting the referrals quickly, they haven’t always been to the right type of specialist, so we’ve been having to re-do them. Please pray that God will bring just the right people to us to help Scott.
· Please pray that God would give those people wisdom in determining a course of action for Scott and that they will all get along well and be able to work together so that Scott receives the best possible treatment.
· We have a Thyroid and body scan scheduled for next week, along with another consultation with our endocrinologist. We still need to get a referral for a geneticist. Pray that the tests fully reveal what needs to be seen and that Scott handles them well.
· Please pray that we don’t get stuck in red tape. We are with an HMO, and so far haven’t run into any problems, but I do know that is a real possibility.
· The tumor does need to be treated. Please pray that there is some kind of “pill” that Scott can take that can treat this medically (both get rid of the tumor and the bone lesions). If surgery is needed, his pituitary might have to be removed if the tumor is entwined around/within it, which would require hormone replacements which will have side effects. And although the bone lesions could also be treated surgically (his skull would be removed and the bone shaved somehow to reduce the thickness), this is not an easy or desirable procedure, and might have to be repeated later at some time in the future.
· Please pray that his growth can be regulated so he won’t become a “giant”, which would reduce his life expectancy.
· Please pray that Scott will be able to handle all the tests and the eventual treatment(s).
· Please pray that we will continue to trust God completely throughout all of this (we have gone from the “immediate crisis that will be resolved one way or another soon” concept to the “this isn’t life-and-death right now, but Scott’s and our lives have been altered for the rest of our lives” idea).
Thank you for taking the time to read this long email (I really did try to keep it short) and mostly thanks for you prayers. We treasure them and will continue to need them for some time. We will continue to give you updates (hopefully much shorter than this one) as we have new information to provide.
Thank you again,
Chuck and Dian
p.s. I have set up a blog that we’ll try to update regularly, you can find it here: dianrae.blogspot.com
