Well, we made it. The flight in was uneventful, which I always like to be able to say about airline flights. We made it to the hotel, as well. My only problem was when the taxi driver asked for payment...wait, do you tip a taxi driver? I movies they always say, "keep the change". Last year Chuck handled this part and I didn't think to ask him. Finally, the taxi driver said, "how much tip"? Ok, now I know that you tip taxi drivers, but how much? So, I decided on $10.00 on a 59.00 taxi bill. So, for those of you "taxi savvy" people out there, how did I do?
The hotel was nice and was the restaurant that we found open at 10:00 p.m. at night. Ironically, it was a western themed place, which I thought was funny...since we had come in from the "west"! Maybe I was just tired.
Scott lost a tooth in the hotel that night...the tooth fairy found him. Not to worry.
The next day we had anticipated a wonderful day of sight seeing and some shopping. As soon as we got the Air and Space Museum, Scott started complaining about not feeling well. Since, it was our only day totally free to sight see, we really didn't want to head back early, so we took a break and he started feeling better.
On the Metro (subway) ride back to the Children's Inn (at NIH) he was fine. Then just as we got off he said that he needed to throw up. Poor guy, at least we found a trash can! He felt awful the entire night, but woke up this morning his normal, happy hungry self! Thank God! He does answer prayer! Please be praying that Cynthia and myself don't get it!
This afternoon we got him checked into the clinical center. Last year while here we had the best nurse, her name is Anne, and we had hoped that she would be here this year. When we got into the pediatric unit, hers was the first face we saw. We were very happy and she said that when she saw Scott's name, she made sure that she was our nurse. See, He does answer prayer!
This year, Scott is sharing a room with a boy from Michigan (or was it Wisconsin) who has recently been diagnosed with McCune-Albright Syndrome. It is there first time here, I remember how it felt last year, so please be praying for Tyler and his family.
Well, I need to sign off, just wanted to give you an update and say thanks for all your prayers!
Sunday, November 15, 2009
Tuesday, October 13, 2009
It's been a long time...
It has been such a long time since my past post about Scott, I thought I would bring everything up to date!
We have had good news. Since we began daily shots at home as well as the monthly "big shots" that we get at the doctor's office we have seen a dramatic decrease in the levels of growth hormone. Last summer when he was first diagnosed with McCune-Albright Syndrome his levels were 1700, for a 7 year old boy they should be between 58 - 278 (roughly). When we got the latest lab results the numbers where down to 158! Praise God!
His growth has slowed down dramatically! Only one pair of shoes in the last several months! Which since he's a size 10 1/2 men's now, that's really a good thing! It's hard to find "cheap" shoes in men's sizes!
We are gearing up for this years visit to NIH (National Institutes of Health) in Bethesda, Maryland. We will be leaving on Friday, November 13th. This year my sister, Cynthia (see blog post from October 29, 2008 for more on my lovely sister!) will be going with Scott and I. Chuck and Ashlyn will be holding down the fort at home.
I will keep my blog updated and also my Facebook status with information while we are in Maryland. Also, I will have specific prayer requests posted here.
Thank you so much for reading and for your prayers!
Dian
We have had good news. Since we began daily shots at home as well as the monthly "big shots" that we get at the doctor's office we have seen a dramatic decrease in the levels of growth hormone. Last summer when he was first diagnosed with McCune-Albright Syndrome his levels were 1700, for a 7 year old boy they should be between 58 - 278 (roughly). When we got the latest lab results the numbers where down to 158! Praise God!
His growth has slowed down dramatically! Only one pair of shoes in the last several months! Which since he's a size 10 1/2 men's now, that's really a good thing! It's hard to find "cheap" shoes in men's sizes!
We are gearing up for this years visit to NIH (National Institutes of Health) in Bethesda, Maryland. We will be leaving on Friday, November 13th. This year my sister, Cynthia (see blog post from October 29, 2008 for more on my lovely sister!) will be going with Scott and I. Chuck and Ashlyn will be holding down the fort at home.
I will keep my blog updated and also my Facebook status with information while we are in Maryland. Also, I will have specific prayer requests posted here.
Thank you so much for reading and for your prayers!
Dian
Friday, July 3, 2009
Prayer for Kevin
Calling you awesome prayer warriors in to action once again. I received this email from a co-worker. Please up hold Kevin, his family and Julie's family in your prayers. Thanks you so much!
Guys,
I am asking for prayer for myself and a dear
little boy... A couple years ago you all prayed for Brendan's team mate who had
a brain tumor, you bought his bracelets, the kids made him cards..... The tumor
is back and I can't even type through the tears, PLEASE pray again for Kevin, he
is on his way home from St.Jude in Memphis after the scans....Surgery is on the
horizon and the family has asked for me to be their prayer warrior in the
hospital again during the surgery....I don't have dates or times but will
be having to tell my boys again here in the next few days....We have a house
full of family here on vacation and my heart is HEAVY!
Julie
Guys,
I am asking for prayer for myself and a dear
little boy... A couple years ago you all prayed for Brendan's team mate who had
a brain tumor, you bought his bracelets, the kids made him cards..... The tumor
is back and I can't even type through the tears, PLEASE pray again for Kevin, he
is on his way home from St.Jude in Memphis after the scans....Surgery is on the
horizon and the family has asked for me to be their prayer warrior in the
hospital again during the surgery....I don't have dates or times but will
be having to tell my boys again here in the next few days....We have a house
full of family here on vacation and my heart is HEAVY!
Julie
Wednesday, June 24, 2009
Emma's Swim for McCune-Albright Syndrome
This in an article that was forwarded on to me by a friend, who's son is also affected by McCune-Albright Syndrome. Please read it and if you feel led to help Emma, there is contact information in the article. If you can't help monetarily, please uphold Emma, her brother, Kevin, and the entire family in your prayers. Thanks!
Magic Foundation: The Art of Being Human. By Marisa Darnel
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.Antoine de Saint-Exupery
Antoine de Saint-Exupery, author of one of the most best selling books, left many beautiful quotes in his writing, but this one I use here, above, is one that touches me very much. He means that the most important thing of a human being cannot be seen, that is his soul, also his thoughts and his feelings and that the only way to see is with our heart. Magic Foundation ( www.magicfoundation.org ) was created to help children who have a very rare syndrome called Mc Cune-Albright and some other similar medical conditions. These are medical conditions that cause some alterations on the features of the patients and on their bodies, especially on their bones. Mc Cune-Albright is a condition from birth and these children grow up looking different besides having very fragile bones who break very easily. These children grow in pain and discomfort and they cannot play as the rest, they cannot be in a sport team or climb a tree or run a race.
You must be asking yourself about the reason for the name Magic to these organization. Well, we have experienced that these children affected by that syndrome have a charming personality which attract everybody in a very nice way. They are full of love and they enjoy affection more than anybody else. We think they have a certain “magic” to be the center of attention among the public and they make us feel love in a very spiritual way.
Everybody at the Magic Fund is very busy now, preparing a Convention which will take place in July and a swimming exhibition to raise money to the children and families who have not the means to attend this important convention.
Emma Buckley’s brother has Mccune-Albright and she has been helping to raise money to help those families who cannot afford traveling to the Convention for the past 4 years. The first 3 years she walked, the last year and this one she decided to swim. She is 14 years old now and the swimming event will take place on June 27th.
We know times are hard for many of us, but in times of need these MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well.
You can learn more about the MAGIC Foundation at www.magicfoundation.org. We can be reached at MsJeannieBuckley@aol.com or 954-294-2196 or Parent4Eva@aol.com (Rich). Please mail checks made out to The MAGIC Foundation in the enclosed stamped envelope to: Emma Buckley.
Here you can read a letter from Emma Buckley: June 2009
Dear Friends and Family,
It’s that time of year! I'm ready to swim again for the children and families of the MAGIC Foundation. For those of you who have never heard of "Emma's Swim for MAGIC", this is forth year we've raised money for MAGIC. With contributions from many of you, we have raised over $24,500.00. That's amazing!
My brother Kevin has McCune Albright Syndrome, a disease that makes his life very hard. Every year we go to Chicago for a convention that the MAGIC Foundation has for children and families like us. We have so much fun there. My parents learn stuff about Kevin's terrible disease and the kids play, swim, talk, and party. Kevin loves going because other kids there have McCune Albright Syndrome, too. The money we raise is used to help families come, who don't have the money to get there otherwise.
This year, I will be swimming on Saturday, June 27th. My goal is to raise $10,000. Last year I swam 6 miles. Please, help by making a pledge for each mile I swim, or by just making a donation. If you live nearby I would love to have you come swim with me. You could even get your own pledges. Please, the families need us!
Thanks, Emma Buckley
Note from Rich and Jeannie, parents of Kevin, the boy who has the McCune-Albright syndrome:
We'd like to take a moment to impress upon all of you just what the MAGIC Foundation has meant for Kevin. Although there are many, we would like to share two of his toughest experiences with you. First, when Kevin was six years old it was discovered that fibrous dysplasia (FD) bone (which Kevin has throughout his skeletal system) had grown completely around his left optic nerve and he had lost 80% of the vision. A very extensive neurosurgery was performed and bone pressing on the nerve was removed. Thankfully, Kevin's eyesight was restored. Then, four months later, during a routine MRI, it was discovered that his right optic nerve was completely engulfed in fibrous bone. We were told it was imperative for neurosurgery to be done again, or Kevin would surely lose sight in his right eye. We were petrified, but felt we must proceed.
Subsequently, Kevin lost the vision in his perfectly sighted right eye, from the surgery. Later, we learned at the MAGIC convention, through listening to one of the experts in the field, that progression of disease in the skull is typically very slow, and seldom results in blindness, although the risk is extremely high to lose the vision from surgery. It is recommended by the very few doctors who have studied MAS, to wait until there is significant vision loss. With Kevin's disease, the decisions for treatment are not always easy to make, but had we been informed with this knowledge back then we would have opted to wait. Perhaps Kevin would still have his vision and we would not be living with the knowledge that our decision was the wrong one. Kevin has had FD surrounding his left optic nerve now for over 10 years and can still pick a knat off the wall with his good eye. Thank you MAGIC Foundation!!!
This same FD has resulted in many orthopedic surgeries for Kevin. Twice his femur (upper leg) bone has broken in half. Once, the surgeon intended on removing bad bone from Kevin's femur and replacing it with "good" bone taken from his hip (it looked good on x-ray). We called MAGIC for advice and were put in contact with a doctor from the National Institutes of Health. We learned that if there were just a few hidden FD cells in the hip, we would be replacing diseased bone with other diseased bone. Even worse, in the process of transferring the bone (if a new scalpel was not used each time) Kevin's hip could be infected with FD, which could eventually eat it away. Subsequently, donor bone was used.
We know times are hard for many of us, but in times of need our MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well. Many hands make light work! If you would like a copy of this letter sent to your email, let me know. Perhaps you could send it out to your friends, family and associates, with your endorsement.
Time and time again, throughout the years we have been the attending the convention we have seen many courses of treatment changed through the knowledge parents have obtained, shared our experiences with others and affected their outcomes for the good, learned of new treatments which have greatly reduced the pain Kevin lives with every day, and gained much needed support from those who travel in our shoes. Although much is not known about McCune Albright Syndrome, the knowledge we do have is power. Thanks to all who have helped and will continue to lend a hand to our families.
May God Bless All Of You, Rich & Jeannie Buckley
A man passed a crippled child, a beggar and a beaten man. Seeing them... he cried,"Great God, how is it that a loving creator can see such things and yet do nothing about them?" God said, "I did do something. I made you." ~Author Unknown ~
Magic Foundation: The Art of Being Human. By Marisa Darnel
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.Antoine de Saint-Exupery
Antoine de Saint-Exupery, author of one of the most best selling books, left many beautiful quotes in his writing, but this one I use here, above, is one that touches me very much. He means that the most important thing of a human being cannot be seen, that is his soul, also his thoughts and his feelings and that the only way to see is with our heart. Magic Foundation ( www.magicfoundation.org ) was created to help children who have a very rare syndrome called Mc Cune-Albright and some other similar medical conditions. These are medical conditions that cause some alterations on the features of the patients and on their bodies, especially on their bones. Mc Cune-Albright is a condition from birth and these children grow up looking different besides having very fragile bones who break very easily. These children grow in pain and discomfort and they cannot play as the rest, they cannot be in a sport team or climb a tree or run a race.
You must be asking yourself about the reason for the name Magic to these organization. Well, we have experienced that these children affected by that syndrome have a charming personality which attract everybody in a very nice way. They are full of love and they enjoy affection more than anybody else. We think they have a certain “magic” to be the center of attention among the public and they make us feel love in a very spiritual way.
Everybody at the Magic Fund is very busy now, preparing a Convention which will take place in July and a swimming exhibition to raise money to the children and families who have not the means to attend this important convention.
Emma Buckley’s brother has Mccune-Albright and she has been helping to raise money to help those families who cannot afford traveling to the Convention for the past 4 years. The first 3 years she walked, the last year and this one she decided to swim. She is 14 years old now and the swimming event will take place on June 27th.
We know times are hard for many of us, but in times of need these MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well.
You can learn more about the MAGIC Foundation at www.magicfoundation.org. We can be reached at MsJeannieBuckley@aol.com or 954-294-2196 or Parent4Eva@aol.com (Rich). Please mail checks made out to The MAGIC Foundation in the enclosed stamped envelope to: Emma Buckley.
Here you can read a letter from Emma Buckley: June 2009
Dear Friends and Family,
It’s that time of year! I'm ready to swim again for the children and families of the MAGIC Foundation. For those of you who have never heard of "Emma's Swim for MAGIC", this is forth year we've raised money for MAGIC. With contributions from many of you, we have raised over $24,500.00. That's amazing!
My brother Kevin has McCune Albright Syndrome, a disease that makes his life very hard. Every year we go to Chicago for a convention that the MAGIC Foundation has for children and families like us. We have so much fun there. My parents learn stuff about Kevin's terrible disease and the kids play, swim, talk, and party. Kevin loves going because other kids there have McCune Albright Syndrome, too. The money we raise is used to help families come, who don't have the money to get there otherwise.
This year, I will be swimming on Saturday, June 27th. My goal is to raise $10,000. Last year I swam 6 miles. Please, help by making a pledge for each mile I swim, or by just making a donation. If you live nearby I would love to have you come swim with me. You could even get your own pledges. Please, the families need us!
Thanks, Emma Buckley
Note from Rich and Jeannie, parents of Kevin, the boy who has the McCune-Albright syndrome:
We'd like to take a moment to impress upon all of you just what the MAGIC Foundation has meant for Kevin. Although there are many, we would like to share two of his toughest experiences with you. First, when Kevin was six years old it was discovered that fibrous dysplasia (FD) bone (which Kevin has throughout his skeletal system) had grown completely around his left optic nerve and he had lost 80% of the vision. A very extensive neurosurgery was performed and bone pressing on the nerve was removed. Thankfully, Kevin's eyesight was restored. Then, four months later, during a routine MRI, it was discovered that his right optic nerve was completely engulfed in fibrous bone. We were told it was imperative for neurosurgery to be done again, or Kevin would surely lose sight in his right eye. We were petrified, but felt we must proceed.
Subsequently, Kevin lost the vision in his perfectly sighted right eye, from the surgery. Later, we learned at the MAGIC convention, through listening to one of the experts in the field, that progression of disease in the skull is typically very slow, and seldom results in blindness, although the risk is extremely high to lose the vision from surgery. It is recommended by the very few doctors who have studied MAS, to wait until there is significant vision loss. With Kevin's disease, the decisions for treatment are not always easy to make, but had we been informed with this knowledge back then we would have opted to wait. Perhaps Kevin would still have his vision and we would not be living with the knowledge that our decision was the wrong one. Kevin has had FD surrounding his left optic nerve now for over 10 years and can still pick a knat off the wall with his good eye. Thank you MAGIC Foundation!!!
This same FD has resulted in many orthopedic surgeries for Kevin. Twice his femur (upper leg) bone has broken in half. Once, the surgeon intended on removing bad bone from Kevin's femur and replacing it with "good" bone taken from his hip (it looked good on x-ray). We called MAGIC for advice and were put in contact with a doctor from the National Institutes of Health. We learned that if there were just a few hidden FD cells in the hip, we would be replacing diseased bone with other diseased bone. Even worse, in the process of transferring the bone (if a new scalpel was not used each time) Kevin's hip could be infected with FD, which could eventually eat it away. Subsequently, donor bone was used.
We know times are hard for many of us, but in times of need our MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well. Many hands make light work! If you would like a copy of this letter sent to your email, let me know. Perhaps you could send it out to your friends, family and associates, with your endorsement.
Time and time again, throughout the years we have been the attending the convention we have seen many courses of treatment changed through the knowledge parents have obtained, shared our experiences with others and affected their outcomes for the good, learned of new treatments which have greatly reduced the pain Kevin lives with every day, and gained much needed support from those who travel in our shoes. Although much is not known about McCune Albright Syndrome, the knowledge we do have is power. Thanks to all who have helped and will continue to lend a hand to our families.
May God Bless All Of You, Rich & Jeannie Buckley
A man passed a crippled child, a beggar and a beaten man. Seeing them... he cried,"Great God, how is it that a loving creator can see such things and yet do nothing about them?" God said, "I did do something. I made you." ~Author Unknown ~
Friday, June 12, 2009
Can I Just Say...
…that my son ROCKS! I have been so impressed by him and his maturity and strength. He has been handling all the shots with so much grace. It amazes me how he can watch the shots (even though we say not to) and does not even flinch! I do have to admit that my feelings are a bit hurt because Scott wants Chuck to give him the shots… but, I guess I really don’t mind if it’s easier for him. It’s just that mom’s supposed to be the caregiver, right?
The last “big shot” that he got was the worst by far. The HUGE needle got clogged so they had to inject him a second time. But, my boy handled it better than any other time for the BIG ONE.
I never would have thought that I would be talking about shots, genetic diseases, IGF-1, biweekly blood draws… wow.
...that my husband ROCKS! He has been handling the shots and the like so much better than I would have ever imagined! These are things that we didn't bargin for but, I am sure glad that he is in this with us!
…that I am sooooooo glad that school is almost out! Bring it on…. Summer!
The last “big shot” that he got was the worst by far. The HUGE needle got clogged so they had to inject him a second time. But, my boy handled it better than any other time for the BIG ONE.
I never would have thought that I would be talking about shots, genetic diseases, IGF-1, biweekly blood draws… wow.
...that my husband ROCKS! He has been handling the shots and the like so much better than I would have ever imagined! These are things that we didn't bargin for but, I am sure glad that he is in this with us!
…that I am sooooooo glad that school is almost out! Bring it on…. Summer!
Tuesday, June 2, 2009
Young and Old at the Same Time?
I received a friend request the other day on Facebook from a old friend from high school. Someone that I hadn't spoken to or heard from in 20 + years. He said that he had been looking for me for a long time and it took 10 minutes on Facebook. Crazy, this phenomenon!
What I find so weird is that it made me feel young and old at the same time. It doesn't feel like I have been out of high school for 25 years and that I am 43 years old. Today a Facebook friend request sent me down memory lane to the early eighties and working at a McDonald's for 3.75/hour. Listening to music by Def Leppard, Van Halen, and the like and cruising around town in a 1974 white Mazda station wagon that my parents had given me, thinking that I was sooooo cool. What a fun trip that was.
But, I had to return to 2009 and face the reality that I am 43. Which isn't all that bad really!!!!! I just never pictured myself being in my forties with gray hair, wrinkles and all the creaks and groans of my knees.
I wouldn't change my life or things that have happened to me. All the experiences that I have had make me who I am today and I kinda like who I am. Creaks, groans, gray hairs and all!
What I find so weird is that it made me feel young and old at the same time. It doesn't feel like I have been out of high school for 25 years and that I am 43 years old. Today a Facebook friend request sent me down memory lane to the early eighties and working at a McDonald's for 3.75/hour. Listening to music by Def Leppard, Van Halen, and the like and cruising around town in a 1974 white Mazda station wagon that my parents had given me, thinking that I was sooooo cool. What a fun trip that was.
But, I had to return to 2009 and face the reality that I am 43. Which isn't all that bad really!!!!! I just never pictured myself being in my forties with gray hair, wrinkles and all the creaks and groans of my knees.
I wouldn't change my life or things that have happened to me. All the experiences that I have had make me who I am today and I kinda like who I am. Creaks, groans, gray hairs and all!
Check this out! Dian. Circa 1982.
Wednesday, May 13, 2009
Update on Scott
Here is a copy of the latest email that Chuck has sent out:
Greetings All,
I don’t remember the last time I emailed everyone, so I think an update on Scott is overdue. Praise God, we have mostly good things to report. I’ll try to keep this at a high level to keep this as short as possible.
Bad news (this is the one bad thing, so I’ll just get it out of the way 1st):
· I think the last time I sent an email, we were excited that his growth hormone levels were dropping down to near normal. Well, the blood test after that email showed his levels had gone back up, which means that the Octreotide is not completely effective for him. Because of this, he has to add an additional injection (Somavert, for those of you medically inclined out there) every other day (that’s the worst part of this). Dian and I will have to give it, which is something new for both of us. Today, a nurse came over and showed us what to do. Dian actually prepared the injection and gave it to Scott.
Now for the praises:
· Although we have to inject Scott every other day, the needle is really small. I believe it is just like the needles that diabetics have to give themselves. Scott said he didn’t even feel it (I believe him; he didn’t even flinch when Dian gave him the shot in his arm, even though he was watching her do it).
· Scott is doing much better with all of the shots. We had a crisis point a few weeks ago when we had to stop his MRI midway through because he refused to let them give him an injection that was part of the MRI. That seemed to be a turning point. He decided he had been “stupid” (his description of himself, not ours) and would do better, which he has. He is such a brave guy! Thank God for this, this is a real answer to prayer.
· A CT taken of his skull several weeks ago indicated that the bump on his right cheek is either unchanged or slightly improved. Dr Collins felt comfortable enough to extend the time until his next CT for this to six months, instead of every 3 months as originally planned.
· An ultrasound of his Thyroid gland revealed nothing new. It isn’t a normal Thyroid because of the MAS, but it is functioning normally.
· The MRI (done without contrast a few weeks ago – this was the one we had to stop because he refused to allow the injection that would give them the contrast MRI) showed that his pituitary has shrunk back to normal size! So, even though his growth hormone levels are still high, the Octreotide is at least helping some. This is a huge praise. This lessens the risk to his optic nerve, as the pituitary is now not right up against it. He finished the MRI today and did a great job with the injection – no fighting being given the shot!
· He still seems to be showing no ill effects. This is so wonderful and such a blessing, because we know of others with MAS that have had their daily activities curtailed, due mainly to the fibrous dysplasia in their bones. Scott has been playing Little League baseball this spring and enjoying it very much. I especially treasure every game, because his situation could change at any time, and he might not be able to keep on playing. As it stands now, we’re planning to sign him up for the fall season. I can’t wait! (I love watching Scott play and being as involved with it as I can – I think I have more fun with it than he does).
· We have had no problems at all with insurance. Everything has been approved with no problems; everything has been covered (minus the co pays, of course). We are so blessed to have good insurance. Each of us has a $500.00 stop/loss amount for prescriptions, meaning that we don’t have to pay more than $500.00 each per year in prescriptions. This is really good, because we will exhaust this amount just with Scott’s Somavert in 2 months.
Please Pray:
· First of all, please thank and praise God for how good He has been to us through all of this. He continues to show his love, care, and control each day.
· For Scott, that the Somavert will be effective in conjunction with the Octreotide and his growth hormone levels will drop to normal soon. Long term, I ask that his levels would drop to the point where his doctors determine he can stop taking the Somavert (I don’t even know if this is possible, but I would love to see this happen).
We serve a great God! Dian and I are grateful to each of you and we thank God for you and your prayers and support. Please keep them up. Also, we want to support you in prayer as well, so please send your prayer requests to us.
God’s Blessings to you all,
Chuck and Dian
Thank you all so much for your support and prayers!
Greetings All,
I don’t remember the last time I emailed everyone, so I think an update on Scott is overdue. Praise God, we have mostly good things to report. I’ll try to keep this at a high level to keep this as short as possible.
Bad news (this is the one bad thing, so I’ll just get it out of the way 1st):
· I think the last time I sent an email, we were excited that his growth hormone levels were dropping down to near normal. Well, the blood test after that email showed his levels had gone back up, which means that the Octreotide is not completely effective for him. Because of this, he has to add an additional injection (Somavert, for those of you medically inclined out there) every other day (that’s the worst part of this). Dian and I will have to give it, which is something new for both of us. Today, a nurse came over and showed us what to do. Dian actually prepared the injection and gave it to Scott.
Now for the praises:
· Although we have to inject Scott every other day, the needle is really small. I believe it is just like the needles that diabetics have to give themselves. Scott said he didn’t even feel it (I believe him; he didn’t even flinch when Dian gave him the shot in his arm, even though he was watching her do it).
· Scott is doing much better with all of the shots. We had a crisis point a few weeks ago when we had to stop his MRI midway through because he refused to let them give him an injection that was part of the MRI. That seemed to be a turning point. He decided he had been “stupid” (his description of himself, not ours) and would do better, which he has. He is such a brave guy! Thank God for this, this is a real answer to prayer.
· A CT taken of his skull several weeks ago indicated that the bump on his right cheek is either unchanged or slightly improved. Dr Collins felt comfortable enough to extend the time until his next CT for this to six months, instead of every 3 months as originally planned.
· An ultrasound of his Thyroid gland revealed nothing new. It isn’t a normal Thyroid because of the MAS, but it is functioning normally.
· The MRI (done without contrast a few weeks ago – this was the one we had to stop because he refused to allow the injection that would give them the contrast MRI) showed that his pituitary has shrunk back to normal size! So, even though his growth hormone levels are still high, the Octreotide is at least helping some. This is a huge praise. This lessens the risk to his optic nerve, as the pituitary is now not right up against it. He finished the MRI today and did a great job with the injection – no fighting being given the shot!
· He still seems to be showing no ill effects. This is so wonderful and such a blessing, because we know of others with MAS that have had their daily activities curtailed, due mainly to the fibrous dysplasia in their bones. Scott has been playing Little League baseball this spring and enjoying it very much. I especially treasure every game, because his situation could change at any time, and he might not be able to keep on playing. As it stands now, we’re planning to sign him up for the fall season. I can’t wait! (I love watching Scott play and being as involved with it as I can – I think I have more fun with it than he does).
· We have had no problems at all with insurance. Everything has been approved with no problems; everything has been covered (minus the co pays, of course). We are so blessed to have good insurance. Each of us has a $500.00 stop/loss amount for prescriptions, meaning that we don’t have to pay more than $500.00 each per year in prescriptions. This is really good, because we will exhaust this amount just with Scott’s Somavert in 2 months.
Please Pray:
· First of all, please thank and praise God for how good He has been to us through all of this. He continues to show his love, care, and control each day.
· For Scott, that the Somavert will be effective in conjunction with the Octreotide and his growth hormone levels will drop to normal soon. Long term, I ask that his levels would drop to the point where his doctors determine he can stop taking the Somavert (I don’t even know if this is possible, but I would love to see this happen).
We serve a great God! Dian and I are grateful to each of you and we thank God for you and your prayers and support. Please keep them up. Also, we want to support you in prayer as well, so please send your prayer requests to us.
God’s Blessings to you all,
Chuck and Dian
Thank you all so much for your support and prayers!
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