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.

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.

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 =)

A Few Quick Facts About Ollier's Disease...

I am excited to announce I have a had two people share stories with me, to be shared on the blog. I am editing those and waiting for some information from Mackenzies Mom before I get those up, but they will be coming soon. I promise... In the mean time, here are a few quick facts about Ollier's Disease. I found this to be informative and easy to understand, so I thought I'd share. =)


- Discussion:
- originally was described by Ollier in late 1800s;
- characterized by multiple enchondroma lesions primarily located w/ in the metaphyseal regions of tubular bones;
- usually diagnosed in childhood;
- pts w/ Ollier's dz have increased risk of a secondary chondrosarcoma developing later in life;
- risk is about 25% by age 40 yrs;

- Clinical Findings:
- most pts have bilateral involvement, w/ predominance on one side;
- enchondromas most frequently involve the short tubular bones of hands and feet as well as long bones of upper and lower extremities;
- development of palpable masses, angular deformity & growth disturbances resulting in angular deformities & leg length discrepancies;
- limb length inequality may be of sufficient severity to require surgery;

- Radiographs:
- in most cases, there will be diaphyseal lesions or metaphyseal lesions which do not cross the growth plate, at least, not until growth plate closure;
- in some cases enchondromatosis will affect patients in the metaphyseal and epiphyseal regions;
- when enchondromas cross the growth plate, severe limb length deformities and angular deformities will develop

***Though its not listed here, the occurance of Ollier's Disease is about 1 in 500,000 or so... and it is usually diagnosed within the first 10 years of life.

In a few weeks, Suzy (Kenzies mom) and I will be meeting to get the ball rolling on the Nonprofit Organization for Ollier's Disease. We are just getting started, this is the absolute very beginning of all the fun. If you are interested in donating, please contact me at marilyn.russell08@gmail.com If you are interested in helping in any way, stay tuned. I will be updating with lists of things readers can do to help.


Thanks For Your Support Everyone!!!!
Team Mackenzie!!!!!!!!!!!!

Spaghetti Feed Pictures!!

These girls gave up cheering at their first game of the year to be with us at Mackenzie's Spaghetti Feed. Way to go ladies!!!!

 

                                           This is Mackenzie with her parents, checking out the bike that was up for auction

 This was seating we had out back. Kids were running the place. :)

 

 A packed house...

 

 Here are our beloved dj's from 101.9 The Wolf and Mr. Cieri (Mackenzie's grandfather.)

 

 To the left we have Marilyn, (Hi! Nice to meet you. I write this blog.) and Mackenzie's Mom, Susanne

 

 This guitar was signed by Tim McGraw, Brad Paisley, Allan Jackson, The Band Perry, Easton Corbin and a couple others to be raffled off. If you do not listen to 101.9 the Wolf...Please start! They have the biggest hearts! Please tune in to 101.9 the Wolf in support of Mackenzie!
  

 

 

These are just a few shots that I caught on my cell phone, from Mackenzie's spaghetti feed in August. Thank you so much to 101.9 The Wolf and their dj's for coming out and making our night a smashing success. Much love everyone!!!

Thanks!!!
Team Mackenzie!!!!!

Adults and Ollier's

It was brought to my attention the other day that I had set up the blog but had only addressed children with Ollier's and not adults. I have since corrected this issue... it was my understanding that Ollier's Disease is diagnosed in childhood, but since there is not a lot of information on this, I didn't find anything talking about adults being diagnosed either in adulthood, or in childhood and then battling to adulthood and through life while carrying this around. I stand corrected. =)

What I would like more than anything, is for people to share their stories or their childrens stories about being diagnosed and treated for Ollier's Disease. My goal is to share those stories to this blog, so that way, when someone googles "Ollier's Disease" they will be linked to this blog and able to see that they are not alone. This blog is public. Its been seen in 8 different countries and we are almost at 300 views... the word is spreading. People are looking. And that is exactly what I want, so please, share your story. You could help someone feel better about facing Ollier's. Your story can change someones outlook and give them strength for their journey, I don't know about anyone else, but that idea definitely appeals to me.

I spoke with Mackenzies mom this week. Mackenzie has multiple tumors on her fingers now that are growing large and are very painful. So painful that shes having trouble coloring. This is a sad turn of events for us and we are praying that she is able to get some relief in the coming months... Soon Mackenzie will be undergoing the first of a series of surgeries to remove tumors and lengthen growth plates to try and keep her body growing as well as possible. This is the beginning of a serious battle for Miss Mackenzie and her family. If you're the praying kind, offer up a prayer for strength for Kenzie's mom and recovery for Kenz. If not, positive vibes are always welcome too.

As always,
Thank You For Your Support!!!!
Team Mackenzie!!!!!

Ollier's Nonprofit Organization...

On August 24th, 2012, Team Mackenzie held a spaghetti feed dinner to raise money. The food was awesome, there was a silent auction, raffle tickets and a LOT of people and a LOT of support for Mackenzie and her family.

I just received word from Mackenzie's mom that Team Mackenzie achieved our goal by raising enough money to start a nonprofit organization for Ollier's Disease. This is fantastic news because currently, Ollier's is SO rare that there really isn't a lot of support in place for families facing this diagnosis. (I'm told that Ollier's numbers are actually 3 people in a MILLION will be diagnosed with this disease, which is contrary to the information I found online and posted previously.) To make matters worse, because this disease is so rare, there is NO protocol in place for monitoring  and treating Ollier's Disease. Our goal is to start getting these things in place and to provide a place for families to turn for support. No one should have to face a disease with little to no knowledge of what they are dealing with and what they are up against and we are out to change that. The long term goal is to start a foundation for Ollier's Disease... and it looks like we are off and running.

As we get organized and more information becomes available, I will be keeping this blog updated. Please follow us so you can stay in the know. And as always, if you have information on Ollier's Disease that you would like to share or would like to share your story on this blog, feel free to send it to me via email at marilyn.russell08@gmail.com.



Thank you so much!!!
Team Mackenzie

Raising Awareness For Ollier's Disease

On July 12th 2012, my friends daughter, Mackenzie was diagnosed with Ollier's Disease. This disease is not hereditary and is extremely rare with an occurance of 1 case for every 100,000 people and is usually diagnosed in the first decade of life... Mackenzie is the only case to ever be diagnosed in the Sacramento area and there isn't much information or support available for Mackenzie and her family. The goal of this blog is to raise awareness and support for Mackenzie and to provide education about Ollier's Disease.

Ollier's Disease is best described as follows:

Enchondromas are common intraosseous, usually benign cartilaginous tumors, that develop in close proximity to growth plate cartilage. When multiple enchondromas are present, the condition is called enchondromatosis also known as Ollier disease. The estimated prevalence of Ollier disease is 1/100,000. Clinical manifestations often appear in the first decade of life. Ollier disease is characterized by an asymmetric distribution of cartilage lesions and these can be extremely variable (in terms of size, number, location, evolution of enchondromas, age of onset and of diagnosis, requirement for surgery). Clinical problems caused by enchondromas include skeletal deformities, limb-length discrepancy, and the potential risk for malignant change to chondrosarcoma. The condition in which multiple enchondromatosis is associated with soft tissue hemangiomas is known as Maffucci syndrome. Until now both Ollier disease and Maffucci syndrome have only occurred in isolated patients and not familial. It remains uncertain whether the disorder is caused by a single gene defect or by combinations of (germ-line and/or somatic) mutations. The diagnosis is based on clinical and conventional radiological evaluations. Histological analysis has a limited role and is mainly used if malignancy is suspected. There is no medical treatment for enchondromatosis. Surgery is indicated in case of complications (pathological fractures, growth defect, malignant transformation). The prognosis for Ollier disease is difficult to assess. As is generally the case, forms with an early onset appear more severe. Enchondromas in Ollier disease present a risk of malignant transformation of enchondromas into chondrosarcomas.

Its a lot of medical speak of course, which can be frightening and confusing to someone who is not familiar with medical terminology. Simply put, Ollier's disease is the growth of tumors in growth plate cartilage. It affects the childs ability to grow and develop normally, usually requires surgical treatment and has about a 20-25% risk of those tumors becoming cancerous.

In Mackenzie's case, the tumors have been discovered through out her body and the doctors have raised her cancer risk to 50 %. Shes only 5 years old and her parents and family are terrified of what lies ahead. Family, friends, and our community are rallying to provide support during this trying time and we will continue to support them through their journey.

 Please follow this blog and pass it on. Our goal is to educate as many people as we can about Ollier's Disease and to make sure that anyone who finds themselves in this situation has a place to turn for support and education. Join us and help spread the word....

Thank You So Much!!!

Sincerely, Team Mackenzie!!!!!