How I have been Inspired

First of all I have been inspired by all of you! Your prayers, support, encouragement and lasagna have amazed me! I truly thank God for each and every one of you.

I have always been a fan of Steven Curtis Chapman. His heart is evident in his music and how much he loves the Lord. His latest CD is called "This Moment". I was inspired by this CD in wonderful ways prior to the current circumstances, but now the music touches me in a deeper way. You may know that Steven’s youngest daughter was killed in an accident earlier this year; she was struck by an SUV driven by his teenage son. While we are not facing the death of a child, I am in awe of his strength and hope in his grief. I have included the lyrics from one song in particular from the CD (I tried to include an audio file, but couldn’t figure out how, maybe you can’t). But, at any rate please read the lyrics, the last verse was added by Steven after his daughter’s death.

Yours by Steven Curtis Chapman

I walk the streets of London
And notice the faces passing by
Something that makes me stop and listen
My heat grows heavy with the cry
Where is the hope for London?
You whisper and my heart begins to soar
As I’m reminded every street in London is Yours

I walk the dirt roads of Uganda
I see the scars that war has left behind
Hope like the sun is fading
And they’re waiting for a cure no one can find
And I hear children’s voices singing
Of a God who heals and rescues and restores
And I’m reminded that every child in Africa is Yours

And it’s all Yours God, Yours God,
Everything is Yours
From the stars in the sky to the depths of the ocean floor
And it’s all Yours God, Yours God, everything is Yours
You’re the maker and keeper,
Father and ruler of everything

And I walk the sidewalks of Nashville
Like Singapore, Manila, and Shanghai
I’m brushed by the beggar’s hand and the wealthy man
And everywhere I look I realize that just like the streets of London
For every man and woman, boy and girl
All of creation, this is our Father’s world

I walked the valley of death's shadow
So deep and dark that I could barley breathe
I’ve had to let go of more than I could bear
And I’ve questioned everything that I believe
Still even here in this great darkness
A comfort and a hope come breaking through
As I can say in life or in death
God, we belong to You

We are Yours, God
The glory is Yours, God
All the honor is Yours, God
The power is Yours, God
The glory is Yours, God
You’re the King of Kings and Lord of Lords
And It’s all Yours God, Yours God
Everything is Yours
All the greatness and power and glory and splendor and majesty
Everything is Yours
It’s all Yours
We are Yours
The glory and honor is Yours
Everything is Yours
It’s all Yours

The reason I wanted to include this was to say that We Are All His and how wonderful that we have Him to lean on and take our hope from. He knows what will happen with Scott and He loves him even more than I can imagine. I pray that this song touches you as it has done me and know how much God loves you!

Please keep us in your prayers!

God is so Good!

Wow! What an amazing 24 hours it has been. One of the wonderful people who have received our emails is Chuck’s cousin, Kristi, who has been such a support and an encouragement to us. Kristi and her family are running a marathon of their own. Her son, Kaleb, has Cystic Fibrosis. They have been running their marathon for seven years.

Kristi has been posting our prayer requests and updates on her blog and a lady whose son has MAS happened to come across Kristi’s blog. She sent information to Kristi about a Doctor in Maryland who is an expert on MAS and sent a copy of a paper that he has written. We took that to our doctor and she encouraged us to contact him. I sent an email on Friday and on Monday night I checked our email and there was a note from him. He would like to see/treat Scott at the National Institute of Health in Bethesda, Maryland. And, unbelievably, there would be no charge for his care at NIH.

This gives me chills and leaves me in awe at how MARVELOUS our God is! Kristi didn’t just happen to keep her blog updated with our prayers. The lady who son has MAS and had information about a doctor that has expertise in this rare disease really didn’t just happen to find Kristi’s blog. I am overwhelmed by the way that God has placed people in our lives and directed us to the most wonderful people. It gives me great comfort in resting in Him for what may be coming down the road.

We contacted Scott’s doctor, who had also emailed and received a response from Dr. Collins, to find out what her thoughts were and she said she would “highly recommend” that we get involved with Dr. Collins.

Please pray that working with Dr. Collins is the right direction that we need to be heading in. If not, pray that would be made clear to us.

Thank you all you prayer warriors! You have been amazing and such a blessing. I thank God for each and every one of you.

Monday has been a Good Day!

I have actually been able to get some work down around the house and even some laundry! Wow. Who’d of thought that I would be excited about something so mundane…?

So far, this week we only have two doctor’s appointments and some labs we are waiting on referrals for, an ENT tomorrow and the oncologist on Wednesday. The ENT is checking Scott’s hearing as Dr. Naidu was concerned about the tumor affecting it. The oncologist for the tumor to see if it can be handled medically, I assume with radiation. Boy, that is a word that freaks me out, well wait, maybe tumor freaks me out more.

One of the things that I have been so thankful for has been my family and my “chosen” family. Our dear friends, Darrel and Barbie are such a blessing in our lives. They have been so involved in our lives, I can’t imagine going through this with out them. Since I have lost both of my parents, they have become like my mom & dad and thus become grand parents for Scott and Ashlyn.

Darrel took the kids on Saturday night to the speedway at the OC fair grounds, they had a blast! Chuck and I were able to have a quite evening at home, what a blessing!

Thank you all for your prayers, support and love. We need each and everyone of you.

Much Love!!!

It's a marathon, not a sprint

I love to watch the Olympics, even though I am one of the most un-athletic people around. I admire the dedication and strength that the Olympians have and thinking about this journey that we are on now makes me realize that we are running in a marathon of a lifetime. Not just ours, but one for Scott as well.

One of the things that I have been thinking about is how do you balance having a “special needs” child with everyday life. We have had so many doctors appointment and lab test, etc… it has been all consuming. I am behind on laundry, grocery shopping, house keeping, you name it… I suppose that when we get past the initial appointments and such things will settle down some. Maybe?

But, I have been inspired by the people who have been so supportive and the prayers that are offered up for us. It is amazing!

Here is a copy of Chuck’s latest email which includes details from the last week. It is lengthy and feel free to skip down to the Praises & Prayer requests if you don’t want the details.


Hi Everyone,

A week has passed since my last email, and although Dian is keeping her blog updated, I thought I’d send out an email with updates since my last email on 8/15.

First off, thank you for your continuing prayers on Scott’s and our family’s behalf. We definitely need them and feel them. Please keep praying for us.

This next section is long. It explains what we did and what we learned this week. If you want to skip it and go down to the praises and prayer requests at the end, please feel free to.

Since last Friday, we have:
· Had a Thyroid Uptake Test done on Tue and Wed (Scott had to take a “nuclear” pill and then they took pictures of his thyroid later that day and the next day).
· The results showed that his Thyroid is enlarged, which our endocrinologist had already determined. Nodules are present (which are apparently what is making the Thyroid larger than normal), but the functioning of the Thyroid is normal. The endocrinologist didn’t seem concerned about the nodules, so we didn’t pursue that at this time (there’s only so much we can absorb at one time).
· Met with a Geneticist on Wed.
· She explained that the cause of McCune-Albright Syndrome (MAS) is a genetic defect, but it is not inherited from the parent(s) nor is it passed on to children by someone who has MAS (we had already read this via info on the Internet, but it was a nice confirmation).
· Something happens early in the development of the embryo with some of the cells. As the cells replicate themselves in preparation for division as the embryo develops, sometimes a mutation occurs and the new cell doesn’t get all of the info from the cell it divided from. Thus, it doesn’t work quite right. This can happen with many cells. Please forgive my 1st grade explanation of this, it’s the best I can do. Depending on how early in the embryo’s development this happens, just a few cells may be affected, or many cells can be affected. This apparently has an impact on how severe or extensive the symptoms are. Ok, that’s the end of the science lesson. Hope it made sense.
· There is currently no way to cure this condition. Some (maybe all) of the symptoms may be able to be treated, but it will not change the root condition.
· Had a Bone Scan done on Wed.
· This was probably the most discouraging point in our week. This scan “looked” for evidence of bone lesions throughout his body. We already know Scott has these in his skull. We were hoping they would be limited to just this area of his body. Unfortunately, he also has them in his femur (upper leg) and tibia (lower leg) bones, plus 3 lumbar vertebrae. None of them are as severe as the ones in his skull. The ones in his femur and tibia are moderate, the ones in his vertebrae are minor.
· Bone Lesions (the Orthopedist today called them fibrous dysplasia, in case that means anything to any of you) cause the bone to be less dense inside (like a hole inside the bone) and cause them to be too thin in places, making them weak and subject to easy fracture. Micro fractures can occur in these cases, which are very painful. Deformation of the bone is also common (they can bulge out, as in the case of Scott’s skull, or they can become longer than they should, as in the case of leg or arm bones). I’m sure there’s a lot more to it than this, but this is the extent of my understanding at this time.
· Met with our Endocrinologist on Thur.
· The results of the lab tests are somewhat inconclusive. There is clearly a lot of growth hormone in his system, probably from the tumor near his pituitary gland. We don’t know yet if the tumor is creating the growth hormone or only stimulating the pituitary to produce too much of it. His sex hormones are low, indicating he is not in early puberty. However, he is exhibiting some external evidence that he is in early puberty. The endocrinologist is ordering more tests to be able to (hopefully) definitively determine if he is indeed in early puberty.
· She (our endocrinologist) suggested that he may just have a so much growth hormone in his body that everything is growing big (like his Thyroid), but is not actually putting him into early puberty. We learned that the body’s glands work together, or are interrelated in that when one gland produces certain hormones, it causes other glands to produce other hormones, which causes other glands to produce hormones, etc. This is apparently how it works during puberty. One triggers part of the process, which triggers another part, etc. How do you like my technical explanation of this? Hope this is making sense. I’m no doctor, that’s for sure.
· She was surprised that the neurosurgeon is so “unconcerned” about his tumor. She thinks it is more urgent than he does. He is currently out of the country, so she will talk to him when he returns.
· Met with an Orthopedic specialist today.
· The purpose of this appointment was to get the doctor’s opinion on Scott’s bone lesions and where to go from here.
· The good news with this doctor is that he has had MAS patients before, so he is very familiar with this. The bad news is that he seemed kind of ho-hum about Scott’s condition, as if it was no big deal. Perhaps, in his experience, this is appropriate, but as his parents, Scott’s condition is a very big deal to us.
· There is no miracle cure here. One treatment that the geneticist had suggested, and our endocrinologist had agreed would be worth looking into, which has been shown to help with the weakening of the bones, is now being found to have only a short term benefit of a few years, then the condition of the bones actually gets worse than without the treatment. The Orthopedist told us this, so his experience will obviously be a plus for us. He simply suggested calcium and vitamin D supplements (the vitamin D helps the body absorb the calcium. Did you know that the fat in milk and milk products actually absorbs the calcium, so it doesn’t get into the body? We didn’t, but we do now).
· The orthopedist took xrays of Scott’s lower torso to get a better idea of how the bone lesions are affecting Scott’s legs. One leg is just over a centimeter longer than the other. A centimeter or less is considered normal, so the orthopedist isn’t too concerned about his now. The xrays showed that the bones are not currently experiencing any deformation, so that’s a good thing. Since Scott is not currently experiencing any pain, the doctor said there is no reason to limit his activities at this time.
· One of the tests we had done earlier was a bone age xray (they take an xray of the hand and somehow can determine how old the bones are from that). That test determined that Scott’s bone age is 8 (he just turned 7 the end of June). Since his body size is that of a 12 year old, that’s actually a good thing. It is one more piece of evidence that he may not be in early puberty. This would be good because children grow approximately a couple of inches or so a year until puberty, then have a big growth spurt, and then stop growing after that. If puberty happens too early, all those years of growth are lost, making the child shorter than he or she would have been if they had started puberty at the right time. The orthopedist did a bone age xray also, and he said Scott’s bone age looks to him as 7 years, which is even better news.
· The orthopedist wants to see Scott again in 6 months, unless we begin having problems.

What’s Coming Up:

· An appointment with an Oncologist on Wed 8/27 (to see if they have any new treatments that would prove effective in shrinking and/or eliminating the tumor in Scott’s brain).
· More lab tests to get a better idea on Scott’s puberty situation.
· A hearing test, to see if his hearing is being impaired at all.
· An appointment with a Neuro Ophthalmologist (due to the tumor being against his optic nerve).

Praises:

· Your prayers. We are doing much better emotionally and relationally with each other than we would be without them.
· Scott still doesn’t exhibit any difficulties. He has no pain, and he appears to still be seeing and hearing fine.
· Dian. She has been a rock. She is being a great advocate for Scott, and is keeping records of all our appointments and what we’re finding out and what we have to do. She’s also looking on the Internet for any info/help she can find.
· You all. One of our cousins forwarded us some info regarding a doctor back east who is supposedly an expert in MAS. Dian copied the article and gave it to our endocrinologist. She had not come across this info before and was very happy to get it. She will contact this doctor (she suggested we might need to go back east for treatment, if that is where the best treatment is available). One of our very dear friends loaned us a scripture verse framed in a nice frame, so we can see it regularly every day. It is Deu. 32.4: “He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong. Upright and just is He.” Reading this really helps me keep things in perspective. If God is in control, which is He is, and if He knew about this all along and determined when we would find out about this condition, which He did, and if He truly does no wrong, which He does not, then I am compelled to completely trust Him even though this situation makes little sense to me. It’s definitely not often easy to do, but it does help.
· Our endocrinologist is obviously very interested in providing Scott with the best care possible. She is leaving no stone unturned and we are glad to have her as our doctor.

Prayer Requests:

· Please continue to pray for us, especially for Dian. She is a rock, but she is under a lot of stress (obviously). Please pray that she will be encouraged, will not be discouraged, will get enough sleep.
· Please pray that we will both have patience with our children. Ashlyn is acting out a little, probably because she senses the extra attention we’re giving Scott right now.
· Please pray that Scott will continue to suffer no symptoms.
· Please pray that the doctors will personally care about Scott and be extra motivated to help him. Please pray that they will coordinate with each other effectively in determining a course of action for Scott’s treatment.

Again, thanks so much for your prayers. Please don’t stop.

…and One Step Back

At least that’s how it feels to me, today. Scott had a bone scan on Wednesday and I had the report faxed to me. I made the mistake of reading it… He does have bone lesions in the lumbar vertebrae (which are mild), femur and tibia (which are more serious). I was hoping and praying that the only lesions that he would have would be in his head. I am still not totally clear on what that means for him, long term. We have an appointment tomorrow with an orthopedic surgeon and will have more information then.

Today, we met with Scott’s endocrinologist, Dr. Naidu. She’s a very nice doctor and seems very genuinely concerned for Scott. She said she has only seen 3 cases of MAS in her career so far and they were all girls. Apparently, it is more common in girls, but it is a very rare syndrome and not much is known about it. So, she said that she is going to have to seek information/assistance from others with experience with MAS. I was glad that she was forthright and told us that.

We had been sent an email from a lady whose son has MAS and she directed us to a doctor in Maryland and sent a copy of an article that he had written. We gave the article to Dr. Naidu and she said that she will contact him and that we should do so as well. She has ordered several more tests for Scott and we still have more appointments scheduled for the next couple of weeks. So we are still waiting on lots of information and then will try and decide what will be our next steps.

Please keep praying for:
Miraculous recovery
The right doctors, test & treatments for Scott and that the information that they get is correct.
Safety for Scott
Comfort of all of us
Strength and wisdom for Chuck and I

Thank you again for your prayers! We are truly feeling them!

One More Step

Today Scott had the first of two tests involving his thyroid. Tomorrow he'll have the second part and a nuclear bone scan. Also, today we went to a Geneticist. We learned a little more information and got some more answers about McCune Albright Syndrome (MAS). We also learned that MAS is not inherited but a gene mutation and that we shouldn’t worry that Ashlyn might have the same syndrome. Praise God!

We have a couple more doctors’ appointments this week. One with our endocrinologist, which after this visit I expect we'll have a lot more answers and hopefully a plan. On Friday we go to an orthopedic surgeon and review the bone scan to see if Scott has any lesions on the bones in his body.

We are still waiting on the referral to the neuro ophthalmologist and a call back for an appointment to see the oncologist.

Scott has been such a trooper and has been very good with all these tests and appointment.

Please keep praying that we get directed to the right doctors and that everything continues to move forward.

The Power of Prayer is Amazing

I have always known that the power of prayer is an amazing thing. But, I have to say that over the last couple of weeks I have FELT the power of prayer.

When we had our first appointment with the endocrinologist I so sure that they doctor would say “it’s nothing, he’s just a big boy”. Well, the landscape of our lives changed dramatically in one afternoon. The next week I was a wreck, on the verge of tears all the time and feeling a lot lost. We asked a few friends for prayer and still in our denial thought that it would be all right.

Then came the day that Scott had his MRI and the doctor called to say he had a tumor. Boy, we were really a couple of wrecks. But, we made a huge plea for prayer and boy was it answered! I can’t believe the number of emails and calls that we received! It was an overwhelming, in a good way.

I have felt a strength and peace over the last few days. I am positive that I wouldn’t be feeling if it wasn’t for the prayers that have been taken to the Throne on our behalf.

Thank you, Thank you, and Thank you. And please keep it up!

A Fun Family Day!

This past Friday, we didn't have any doctor’s appointments for Scott. Only for Chuck and I! He had a chiropractor visit and I had my yearly mammogram (what a joy that is)! Anyway, with an almost free day we decided to have some family fun!

We went to the Discovery Science Center in Santa Ana. The kids had been there but not Chuck or I, it was fun!
















From there we went to Downtown Disney and ate that the Rainforest Café. Then on to the Lego store. Both of the kids got some Legos and we spent the rest of the evening at home building Legos!

It was a good day as a family and we all really enjoyed!

A copy of Chuck's email

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

The Good News and the Bad News

Today was another appointment in the long line of appointments that we have coming up. Today we saw the neurosurgeon. The good news is that the tumor on his pituitary gland isn't a have to surgery tomorrow kind of thing. The doctor actually said that he would rather try and handle it medically first, before trying surgery. So as a result of that he wants us to visit an oncologist to see if there would be a type of treatment for Scott. The tumor is not cancerous, benign, in that sense.

The bad news is that he has some major thickening of the bones in his skull and will likely, at some point, need to have surgery to remove the build up of bone. The build up is part of the McCune-Albright Syndrome (MAS). He might have to have this done more than once over his lifetime. We have a nuclear bone scan scheduled for Wednesday, August 20th and an appointment with an orthopedist on Friday, August 22nd. We'll find out then if he has any of these build ups on other bones in his body.

We both feel like we know a little more but still need to know a whole lot more. We have several referrals that we are waiting on still and I don’t know how many more appointments to set up. Right now my mind is spinning and I am feeling totally overwhelmed! This is something that I never imagined that I would be going through as a parent. It is unbelievable. But, here we are and I am trying to rely on the Lord and rest in His grace, moment by moment.

Please pray for these things specifically:

1. Miraculous recovery.
2. Referrals would continue to be approved by insurance company and appointments would be scheduled quickly.
3. We haven’t told Scott anything yet, just that we are trying to figure out why he is so tall. Please pray that we have the wisdom of what to tell him and when.
4. That we are directed towards the right doctors, treatments and tests.
5. Strength for the family.

Thank you all so much for you support and prayers!

Updates here

I thought that it might be easier to keep everybody updated on Scott and what is going on here through a blog. I have had this account for months and never actually used it!

But, I have appreciated seeing other folks blogs to keep everyone up to date and decided to follow suit. (Thanks, Kristi!).

We really don't have any new information as yet. We have an appointment with a neurosurgeon tomorrow (Thursday, Aug. 14 at 1:00 p.m.), we are both anxious to see how that goes and what that will mean for Scott. I think that we are both assuming that he will have to have surgery soon.

We are still waiting on appointments for a nuclear bone scan , an nuero opthamologist and an orthopedic specialist.

I will include here a copy of an email that Chuck sent out this morning, as it has some good info also.

Chuck's email:

Hi All,

Thank you all for your tremendous support. Dian and I are overwhelmed by the number of you who have called or responded to my email request. Your prayers are really helping. One thing that Dian had asked people to pray for was a quick turnaround on getting referrals to the tests and specialists Scott needs to see. So far, we have had some success in that area (we managed to get an appointment with the neurosurgeon on Thursday, which was nearly a week earlier than they had originally told us they could see us, and that right now is our greatest concern), but we are also finding that we are not always getting referred to the right kind of specialists, so we’re having to get new referrals. Please pray that God would bring just the right doctors to us and that He would give them wisdom as they review Scott’s tests and what needs to be done.

We still have a neuro-opthamologist to get a referral for, a full body nuclear scan to have done, plus 2 or 3 other referrals – I can’t remember it all. Please pray also that Dian can hold up under this, the bulk of dealing with the referrals falls to her.

Our endocrinologist, who is requesting the various tests and appointments with the specialists, appears to have determined now that Scott does have McCune-Albright Syndrome. It is fairly rare condition and can have many different impacts on the body. Our greatest concern remains the tumor on/near his pituitary gland. We hope to get a better idea what the treatment options and prognosis for this is when we meet with the neurosurgeon on Thursday.

Please continue to uphold us in your prayers. Thankfully, so far Scott does not feel ill in any way, and he in fact has no idea yet that there is anything wrong with him (we’ll deal with that when we know more and what lies ahead for him).

Again, thank you, thank you, thank you for prayers and support!

I will give you another update on Thursday, when hopefully we will know more.

Gratefully,

Chuck


For those of you interested in learning more about McCune-Albright Syndrome, here is a web site that I found useful.

http://www.magicfoundation.org/www/docs/109/mccune_albright_syndrome.html

Please keep us in your prayers, you don't know how much we appreciate and feel them!