THANK YOU TO SMART/NAACP OUR THON FAMILY

WE HAVE THE BEST THON FAMILY IN THE WORLD NAACP/SMART! EVERY YEAR THEY MAKE SURE WE HAVE THE BEST WEEKEND! THON IS FOREVER APART OF OUR HEARTS AND SO ARE THE STUDENTS FROM NAACP/SMART!!!! THEY ARE FAMILY TO US AND I JUST WANT THEM ALL TO KNOW HOW MUCH WE LOVE THEM AND APPPRECIATE EVERYTHING THEY DO FOR MAKHI AND OUR ENTIRE FAMILY!!! WE ARE PENN STATE:)

Penn State’s THON raises record $12 millon for pediatric cancer

Penn State students and alumni danced their way into the record books. The university’s annual dance marathon fundraiser, known simply as THON, shattered the previous record of about $10 million by raising more than $12 million this past weekend. The 46-hour Penn State IFC/Panhellenic Dance Marathon, or THON, raised funds for the Four Diamonds Fund at Penn State Hershey Children’s Hospital. The money is donated to help fight pediatric cancer. THON has raised more than $89 million for the Four Diamonds Fund since 1977, according to the university’s website. More than 15,000 students participated, including 700 dancers who spent the entire weekend on their feet.

THON RAISED 10.5 MILLION IN THE FIGHT AGAINST PEDIATRIC CANCER

Makhi and the family just attended our 4th year of THON. And again the PENN STATE students raised a unbelieveable amount of money 10.5 MILLION!!! THON is the largest student-run philanthropy in the world. Its goal is to conquer pediatric cancer by providing emotional and financial support to children and families at Penn State Hershey Medical Center. Makhi's THON family is the NAACP & SMART and we love them. We have been with them for 4 years.This year he had to new dancers Tenesha Swift & Chris Thompson! Both of them danced 46 hours and could not sit down....I am no sure how they did it but they did and all FTK!!!!! I would also like to thank Shanice Wellington, Lerell Richards,Kiwan Wirght, Tiffany Parker and everyone in the NAACP & SMART ORG that made our trip to THON so much fun.

Tenesha Swift & Chris Thompson NAACP & SMART DANCERS


Makhi he is doing well. May of this year Makhi will be ACTH for 2 years:)!!!!!! He still stuggles in school and he needs lot of extra help but he is making progress. He has just started a new drug call FOCLAN and it really seems to be helping him. His teachers say that he is really learning now. I went threw many ADHD meds and none of them worked but this one has:) I hope all OMS families kids are doing well


Cierra


Makhi and the QB for PENN STATE

Makhi's first day of 1st grade

Hello to my OMS family.It's been awhile since I have done a update. I have been getting alot of e-mails lately asking how Makhi is so I figured it was time to do another post lol :). Makhi has been off ATCH for 15 months now and IVIG for 12 months and is still going strong.

Makhi's behavior is really the only sign of OMS that I can see anymore. His coordination/balance is good and his speech is getting alot better. It can still be difficult to understand him sometimes but his speech is so much better than it was just a year ago.

Makhi did very well last year in school and made hugh strides. We had to move over the summer and now he will be attending a new school which has me on edge. I am just hoping and praying that his new school shows the same caring and concern as Middletown (FINK) did.

He is playing his second year of football for Seven Sorrows and he had his first game his pass weekend.


Over the summer Makhi has discovered some new interest. Basketball, Skating Boarding , and riding his bike without training wheels;)

I really could not be happier with Makhi's progress.

I always go back to that day Aug 2007 in Springfield IL when I was told that Makhi would more than likely never attend a regular school or play sports and I look at him now and he makes me the proudest mama in the world :)

1 year today Makhi was taken off ACTH

I have some great news to share with all of my OMS family. Today is a great day and marks the beginning of a great future for Makhi and a huge milestone for him!!!!! He has been off ACTH for one year today with no signs of relapsing. This year has been Makhi's best year since being struck with cancer and OMS.

To the families who children have been DX with OMS I wanna share a little insight. There were times when I felt like this nightmare would never be over. I would spend hours, weeks, months pacing the floor with my son who did not NOTHING but scream and cry morning,noon,and night. Just 4 years ago I was uncertain if my son would ever walk,or talk again or if he would even make it . I was told my son would never attend a regular school , play sports or ever live the life of a "normal child"....well that couldn't be any further then the truth. Makhi is attending school and doing very well. He plays football and loves it...

My son Makhi is my HERO...He fought a hard long fight , his strenght, and his resilience has been nothing short of amazing!!!! So my only bit of advice is NEVER GIVE UP!!!!

MOMMY LOVES U AND TODAY IS A GREAT DAY AND THE BEGINNING OF UR BRIGHT FUTURE

Merry Christmas Happy New Year and so on......:)

Boy the holidays have passed so fast and it is hard to believe that we are off to a new year already. But with the New Year bring lots of changes and hopefully much more progress for Makhi. I am so happy to report that Makhi is still continuing to make Hugh strides in school. In Sept member of last year when he started school he was unable to recognize any letter or numbers and was unable to write his name. Well within 4 months of school he is now able to recognize all his letters and numbers and can write his name. He is even starting to read. My boy NEVER fails to amaze me. He has some GREAT teacher who are wonderful with him also. Makhi has also made allot of gains in his social skills making many new friends and he even has himself a little girlfriend LOL :) Not only his he a smart little man he is really handsome to :)

We are off the predisone at this point and still continuing with the Metotraxate once a week. The Metoraxate still continues to make his sick to his stomach for about 2 days after he takes it:(.

Makhi is looking forward to spring so that he can start playing baseball. He has never played but he wants to take another sport up so we will have to see how this goes. He really loved football and I can't wait for him to play that again.

I would ask everyone to keep praying for all the children who still continue to struggle with OMS and also to sign a petition to make January 6th OMS Awareness Day! You can do this by going to http://apps.facebook.com/petitions/1/OMS-AWARENESS-DAY/
you not alone can sign this petition by you can share you story about your OMS child or you experience with a OMS child.

Thank you for checking in and please take the time to sign this petition. Helps us put this rare disease on the map.
Tara & Makhi

Two Steps Forward One Step Back .....

Again it has been to long since I have got to update Makhi's page...But all I can say is life is BUSY around this house. LOL:)

Well my last update has come back to bit me in the butt just when I thought we were home free and off all the meds (at least for the OMS) OMS came back and reared its ugly head again. The first red flag was Makhi's behavior was slipping and slipping fast. He was becoming very cranky and unable to make a choice about anything...then came the shakes in the hands....By this time I was in freak out mode and called his doctors and demanded that we see them right away..If anything I have learned from Makhi's illness (OMS) is to act fast and not to wait and see how things go. The last thing I ever want is to have Makhi in a full blown relapse. I just don't think I could ever watch my son go threw that hell again.

So Makhi is back on steroids (JOY) NOT!!!!! ...... Predinsone which we have never used before Makhi was a ACTH (which in a steroid that is injected intramuscular) user for 3 years. And also he has been put back on Methorexate which is a oral chemo drug. So as of now he is doing alot better. We are going to keep him on these drugs for the next 6 months and then go from there. The doctors think maybe he may have to go back on the IVIG which I am hoping is not the case. Makhi always hated having to sit threw the 8 hours infusion. And since he no longer has his medi port he has to have the IV in his hand which he hates even more... For now we are just going to take it one day at a time.

Now off to some good news . Makhi is doing so well in school... Better than any of us would have thought. He now is able to recognise 18 letter out of the alphabet and in the beginning of the year he didn't know any. He is now able to read his little paper books that the school sends home. He has also completed his first year of football and he just loved it. It was so nice to see him take some pride in himself and his teammates. This is the first time Makhi has ever been able to do what the "OTHER KIDS" do. His health issues kept him from being able to live a "NORMAL" life. He made so much progress and he truly loves the sport. GO EAGLES!!!! The hole team and coaches made me proud.....

Please keep the prayers coming for all the children who are ill. And count your blessing everyday.
God Bless
Tara