Wednesday, March 12, 2014
UPDATE
Just a quick note to let people know... we are still here. I write for this blog, however my partner has been out of commission so I have nothing new at the time. Please look on Facebook for more info. Thanks.
Tuesday, July 2, 2013
Hometown Hero's.... Ay Jalisco supports Team Mackenzie...
The wonderful Mexican food place in Riverbend Market. If you are a West Sac native, you know this place. I stopped in and asked if I could put Mackenzie's ribbon on the window and they agreed. If you've never been there, you should go. Their food is amazing!!!
Thursday, January 10, 2013
Sam's Story
Thank you Erin, for sharing Sam's story with us!
** Sam was diagnosed with Ollier's Disease at the age of 10 months. He is now 2 years old.
Sam, my son, has had 2 surgeries since his diagnosis and we are prepared for several more. The disease has severely impacted his right leg and, thus, his mobility. It has been a wild ride attempting to figure out his care due to the rarity of the disease, but he is currently being treated at the Mayo Clinic in Rochester, MN.
As always,
Thank you for your support!!
Team Mackenzie
** Sam was diagnosed with Ollier's Disease at the age of 10 months. He is now 2 years old.
Sam, my son, has had 2 surgeries since his diagnosis and we are prepared for several more. The disease has severely impacted his right leg and, thus, his mobility. It has been a wild ride attempting to figure out his care due to the rarity of the disease, but he is currently being treated at the Mayo Clinic in Rochester, MN.
As always,
Thank you for your support!!
Team Mackenzie
Shannon's Daughter...
** Thank you Shannon, for sharing your daughters story with us. I didn't find her name anywhere in the email, hence the title.
My name is Shannon, I have a 3 1/2 year old daughter who was diagnosed at 18 months with Olliers Disease. I initially took her to her pediatrician for a bump on her left ring finger. They took an xray, then referred to ortho to take more xrays. After going back and forth and dr to dr, we had 2 orthopedic doctors finally agree on a diagnosis. We are approaching our annual set of xrays on Wednesday, which might I add puts me into panic mode as soon as the appointment is made.
My daughters tumors are in her left hand, fingers and wrist, both heels in both feet and the femurs...he sees something there but as of last year it was not close to the growth plate. We will see Wednesday if that has changed. The only obvious tumor is on my daughters left ring finger and seems to be growing. I stil,l after the years, wish and pray that we will go in for our yearly exam and they will say they were wrong in diagnosing her.
As always,
Thank you for your support.
Team Mackenzie
My name is Shannon, I have a 3 1/2 year old daughter who was diagnosed at 18 months with Olliers Disease. I initially took her to her pediatrician for a bump on her left ring finger. They took an xray, then referred to ortho to take more xrays. After going back and forth and dr to dr, we had 2 orthopedic doctors finally agree on a diagnosis. We are approaching our annual set of xrays on Wednesday, which might I add puts me into panic mode as soon as the appointment is made.
My daughters tumors are in her left hand, fingers and wrist, both heels in both feet and the femurs...he sees something there but as of last year it was not close to the growth plate. We will see Wednesday if that has changed. The only obvious tumor is on my daughters left ring finger and seems to be growing. I stil,l after the years, wish and pray that we will go in for our yearly exam and they will say they were wrong in diagnosing her.
As always,
Thank you for your support.
Team Mackenzie
Thursday, December 27, 2012
Mackenzie Update
Hello everyone!! Merry Christmas!! I hope the holidays are treating everyone well.
I have received news from Susanne and it looks like Mackenzie will be having her first surgery in February, on her hand. Susanne and Mackenzie's father haven't agreed yet as to whether they will allow doctors to attempt surgery on both hands or just one at this time. Since being diagnosed in July the tumors on Mackenzies hands have doubled in size. Once the doctors remove the tumors, they will be sent to pathology to be tested to determine whether or not the tumors are cancerous. In the meantime, mini Mack is in a lot of pain and her little hands are bothering her. February is a long time away.... heres to hoping they can get both hands done at once and that the tumors are not cancerous.
After the doctors remove the tumors, they will have to do bone grafts to try and ensure that Mackenzies hands keep growing normally with minimal deformity. Hopefully the grafts take. If they don't, the results could be disastrous. Please keep Mackenzie in your thoughts and prayers. 2013 is going to be a challenging year for her and her family.
I have received news from Susanne and it looks like Mackenzie will be having her first surgery in February, on her hand. Susanne and Mackenzie's father haven't agreed yet as to whether they will allow doctors to attempt surgery on both hands or just one at this time. Since being diagnosed in July the tumors on Mackenzies hands have doubled in size. Once the doctors remove the tumors, they will be sent to pathology to be tested to determine whether or not the tumors are cancerous. In the meantime, mini Mack is in a lot of pain and her little hands are bothering her. February is a long time away.... heres to hoping they can get both hands done at once and that the tumors are not cancerous.
After the doctors remove the tumors, they will have to do bone grafts to try and ensure that Mackenzies hands keep growing normally with minimal deformity. Hopefully the grafts take. If they don't, the results could be disastrous. Please keep Mackenzie in your thoughts and prayers. 2013 is going to be a challenging year for her and her family.
Wednesday, November 28, 2012
Coping with Ollier's....
I'm sitting with my music tonight and I'm thinking of Mackenzie. Sus noticed that her finger tumors are looking like they've increased in size again. She has doctors appointments this week... I'm still waiting on word about those... in the mean time, we pray.
I do not have Ollier's myself. I haven't dealt with this disease on the day to day basis except for this blog. As the blog is gaining popularity, the emails are starting to trickle in, both from parents of children with Ollier's disease and adult patients facing this diagnosis. I read emails and fb messages talking about surgery, after surgery and multiple complications... life spent recovering from surgery and illness. Long drawn out recoveries, with lots of unknowns and very little information and seemingly, very little hope...
Last holiday season, Mackenzie was a normal, healthy little girl with her future gleaming bright and uncomplicated before her. This holiday season Mackenzie is preparing to begin her fight, as Susanne and I begin to rally and get the very first nonprofit organization for Ollier's Disease up and running. Life can change in an instant. And sometimes those changes are hard hitting and a heavy load to carry. No one should have to carry this alone. This blog is a place of support and connection for patients and their families, the roots for our nonprofit.... Get involved, donate, share your story and lets give the gift of hope this year, in honor of sweet Mackenzie and all of the others.
Thursday, November 8, 2012
Emily's Story....
Thank you so much to Emily's mom, Carrie, for sharing Emily's story... And I will be sure to pass your message on to Mackenzie's mom.
I Just came upon your blog today and thought I'd write you a quick note. My daughter, Emily, was diagnosed with Ollier's Disease when she was 3, she is now almost 15. I know what Mackenzie's family is going through right now and how scary it is to have a disease that very little is know about. Emily has been through 10 surgeries, 2 of which were to lengthen her left femur. The lengthening surgeries are very difficult. It has now been almost 3 years since the last surgery so we are in a good place. Despite it all, Emily is one of the happiest, most well adjusted teenager you'd ever meet. We live in San Jose, I saw that Mackenzie is in Sacramento.
As always,
Thank you for your support.
Team Mackenzie =)
I Just came upon your blog today and thought I'd write you a quick note. My daughter, Emily, was diagnosed with Ollier's Disease when she was 3, she is now almost 15. I know what Mackenzie's family is going through right now and how scary it is to have a disease that very little is know about. Emily has been through 10 surgeries, 2 of which were to lengthen her left femur. The lengthening surgeries are very difficult. It has now been almost 3 years since the last surgery so we are in a good place. Despite it all, Emily is one of the happiest, most well adjusted teenager you'd ever meet. We live in San Jose, I saw that Mackenzie is in Sacramento.
As always,
Thank you for your support.
Team Mackenzie =)
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