Manymosi
Wendy got her wish!
- Joined
- Jun 7, 2010
- Messages
- 65
Let me introduce myself I am Garry (52) and have been blessed with 12 children with my wife, Kim (51). We have 6 boys and 6 girls. The four oldest (all boys) are married and out of the house. Then we have a girl and boy who are college age and still live at home. They are not eligible for the Wish trip so I wont give any details on them. That leaves us with:
Sarah (just turned 18) has been a BIG help taking care of Wendy
Stephen (16)
Susanna (13) Wendys closest sister and friend
Wendy (11) Wish child Ill explain more later.
Melissa (9)
Heather (almost 8).
About Wendy She has been diagnosed with Cushing's Syndrome - a very rare condition caused by too much Cortisol, a stress hormone. The most bothersome symptoms are:
Lack of growth - she hasnt grown any in the past 3 years or so.
Red cheeks
Round puffy face
Buffalo hump on her back
General muscle weakness.
About 95% of Cushings is caused by a tumor in the Pituitary gland. After a myriad of tests, scans etc. She was sent to the University of Michigan hospital to have one removed. The surgery was unsuccessful because the Tumor was just some benign tissue. She then was able to go to the National Institutes of Health in Bethesda, MD. The NIH is the Federal Government's primary research hospital. Because of the rarity of her condition, she was able to enroll in a clinical study. One of the nicest benefits of the NIH, is that there is no charge for any of the care she receives there (our tax dollars at work!). They even pay for airfare for two people, or pay mileage if we drive, and there is a hotel called the Childrens Inn where families of patients can also stay free of charge.
Back in March Wendy had part of her Pancreas removed to remove a tumor that was found. Unfortunately, this did not cure her Cushings because the rest of her Pancreas is infiltrated with a Multi-centric Neuro-Endocrine tumor, which are microscopic Baby tumors. These are so rare that the NIH knows of maybe 20 patients with this specific type of tumor, and only a handful of children. The Doctors have put her on Ketakonozole which has lowered her Cortisol to almost normal levels, but this is only a temporary solution as the Ketakonozole will gradually lose its effectiveness. Actually, this week Kim, Wendy, and Sarah are at the NIH for tests, and to see if the tumor has grown at all since March.
I wont even go into the many other hospital visits for tests, MRIs , CT scans, etc. along with a few emergency room visits, and other complications, including a large cyst that formed from fluid leaking from the Pancreas, since March. Throughout all of this Wendy has been a trouper! Yes, she has been frustrated, scared, and discouraged at times, but overall has done incredibly well in handling the long and twisty road we have been on. I am very, very proud of her.
So what does all of this have to do with Walt Disney World?
Well, I have a wonderful Aunt who has sent either my wife or myself along with two of our children (as they got old enough), to Disney World, all expense paid for 4-5 days. I, especially have grown to love Disney World. After the last trip in 2004, my Aunt let us know she could no longer afford any trips as she had to move into an assisted living home. We just have not been able to afford to pay our own way, and Wendy would have been in the next group to go, so she has been praying since at least 2007 that she would somehow be able to go. She certainly didn't want to get cancer in order to go, but a Wish trip certainly helps ease the hardships she has been through!
A couple of weeks ago, we met with two Make A Wish volunteers so Wendy could officially make her wish - a trip to Disney World!
She really, really, would like to stay on property, preferably at Wilderness Lodge, but would settle for anything really. The volunteers said they would send the five youngest children, and possibly Sarah, because she is still at home and has been a caregiver. As far as dates, they are looking at February or March of next year which is fine with us. If that doesn't work we will probably wait until September or October as we don't want to go during the hot summer months.
I think I will stop for now. I have to figure out how to post some pictures. I managed to put a couple of pics in my signature, but they seem to appear only half the time.
If you made it this far thank you for your patience!
Sarah (just turned 18) has been a BIG help taking care of Wendy
Stephen (16)
Susanna (13) Wendys closest sister and friend
Wendy (11) Wish child Ill explain more later.
Melissa (9)
Heather (almost 8).
About Wendy She has been diagnosed with Cushing's Syndrome - a very rare condition caused by too much Cortisol, a stress hormone. The most bothersome symptoms are:
Lack of growth - she hasnt grown any in the past 3 years or so.
Red cheeks
Round puffy face
Buffalo hump on her back
General muscle weakness.
About 95% of Cushings is caused by a tumor in the Pituitary gland. After a myriad of tests, scans etc. She was sent to the University of Michigan hospital to have one removed. The surgery was unsuccessful because the Tumor was just some benign tissue. She then was able to go to the National Institutes of Health in Bethesda, MD. The NIH is the Federal Government's primary research hospital. Because of the rarity of her condition, she was able to enroll in a clinical study. One of the nicest benefits of the NIH, is that there is no charge for any of the care she receives there (our tax dollars at work!). They even pay for airfare for two people, or pay mileage if we drive, and there is a hotel called the Childrens Inn where families of patients can also stay free of charge.
Back in March Wendy had part of her Pancreas removed to remove a tumor that was found. Unfortunately, this did not cure her Cushings because the rest of her Pancreas is infiltrated with a Multi-centric Neuro-Endocrine tumor, which are microscopic Baby tumors. These are so rare that the NIH knows of maybe 20 patients with this specific type of tumor, and only a handful of children. The Doctors have put her on Ketakonozole which has lowered her Cortisol to almost normal levels, but this is only a temporary solution as the Ketakonozole will gradually lose its effectiveness. Actually, this week Kim, Wendy, and Sarah are at the NIH for tests, and to see if the tumor has grown at all since March.
I wont even go into the many other hospital visits for tests, MRIs , CT scans, etc. along with a few emergency room visits, and other complications, including a large cyst that formed from fluid leaking from the Pancreas, since March. Throughout all of this Wendy has been a trouper! Yes, she has been frustrated, scared, and discouraged at times, but overall has done incredibly well in handling the long and twisty road we have been on. I am very, very proud of her.
So what does all of this have to do with Walt Disney World?
Well, I have a wonderful Aunt who has sent either my wife or myself along with two of our children (as they got old enough), to Disney World, all expense paid for 4-5 days. I, especially have grown to love Disney World. After the last trip in 2004, my Aunt let us know she could no longer afford any trips as she had to move into an assisted living home. We just have not been able to afford to pay our own way, and Wendy would have been in the next group to go, so she has been praying since at least 2007 that she would somehow be able to go. She certainly didn't want to get cancer in order to go, but a Wish trip certainly helps ease the hardships she has been through!
A couple of weeks ago, we met with two Make A Wish volunteers so Wendy could officially make her wish - a trip to Disney World!
She really, really, would like to stay on property, preferably at Wilderness Lodge, but would settle for anything really. The volunteers said they would send the five youngest children, and possibly Sarah, because she is still at home and has been a caregiver. As far as dates, they are looking at February or March of next year which is fine with us. If that doesn't work we will probably wait until September or October as we don't want to go during the hot summer months.
I think I will stop for now. I have to figure out how to post some pictures. I managed to put a couple of pics in my signature, but they seem to appear only half the time.
If you made it this far thank you for your patience!
I will continue to say prayers for a speedy recovery and hope all goes smooth, looking forward to following along as your PTR progresses 
Yeah on getting to stay at the Wilderness lodge.
