Makhi Woodman Fighting Opsoclonus-Myoclonus Syndrome & Neuroblastoma

Makhi's first day of 1st grade

2011-09-06T07:22:00.000-07:00

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

2011-05-25T08:58:00.001-07:00

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......:)

2011-01-05T17:43:00.000-08:00

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 .....

2010-10-27T19:10:00.000-07:00

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

Mystery Diagnosis On Discovery Health Channel Show on OMS

2010-09-10T06:15:00.000-07:00

Hello
I wanted to let everyone know that they will be re-airing the the episode of the little girl Alexa that has the same disease that my son Makhi has on Mystery Diagnosis on Saturday Sep 11, 5:00 pm for those who missed the 1st showing of it on Monday night... For anyone that knows Makhi I would hope that you take the time to watch this show. OMS is a very hard disease to explain and it helps people understand the diease and also will show you the struggles that my little man has faced to get where he is today. BTW Makhi is doing so well ...off all meds since May and no signs of OMS..... We had a scan done of him back in May also and there is no signs of neuroblastoma.... It would not be reasonable for me to say he is home free but he is sure off to a good start....PRAISE GOD!!!!!
If you could please tune in for this show on Saturday at 5pm channel 71 for those of you that live in Middletown.....

DISCOVERY HEALTH CHANNEL
(60 minutes) Mystery Diagnosis
The Toddler That Stopped Walking
TV-PG, CC
Saterday Sep 10 at 5PM
Thanks Tara

MAKHI IS OFF ALL MEDS FOR OMS

2010-07-05T17:35:00.000-07:00

It has been sooo long since I have last updated. I have so much good news to share with everyone about Makhi.
MAKHI IS OFF ACTH AND IVIG SINCE MAY AND IS DOING GREAT!!!!! PRAISE GOD!!!! I thought the day that I would be able to say that would never come but it has and the feeling of relief is something that I am just unable to put into words... Makhi has beat all the odds that were stacked against him. Makhi was DX in July of 2007 with SERVE OMS!!! B-Cells were 7 times enfolded and I was told that Makhi would more than likely never attend a regular school and that he may never do things that all the children his age would do.. Well Makhi has surpassed all those odds!!!!! Makhi still has some OMS sytoms that may never go away like behavior but besides that he is no different then a normal child who has never had cancer of OMS.

Makhi is really enjoying the summer without all the doctor appointments!!!! No more infusions all day no more going to the doctors every week and getting poked all the time. It almost like he is just now getting to live the life of a NORMAL child. His oncology doctor said he is doing so well that he does not even need to be seen until September. WOW that is just weird after feeling like we lived there for 3 years....

So instead of the doctor appointment Makhi is learning all sorts of new things. He has learned how to swim and spends almost everyday at the pool with me and his 2 sisters. He has made himself alot of new friends at the pool that he loves to play with them. Makhi is also starting football in 3 weeks. He is attending a week long football camp and then will start playing games in August!!!

I will never take Makhi's freedom for granted EVER. I can't help but be brought to tears when I sit back and watch him. I will NEVER forget how this disease once crippled my son and to see him today playing and doing things that all 5 years should be doing it just takes my breath away at times :)

On May 4,2007 OMS and Neuroblastoma stole my sons childhood but it NEVER stole his spirit and I am soooooo very proud of my son.

There are so many new families that I have talked to who's children with newly DX with OMS and I would ask that everyone pray for them and their families. And for those who continue in your fight my prayers are with you every night...

2010-03-26T06:35:00.000-07:00

After a long day of testing we have got the answers that we wanted. Makhi scan for Neuroblastoma is "clean" NO EVIDENCE OF DISEASE...HIPP HIPP HOORAY!!!!!!THANK GOD!!!!
This test is always the most nerve racking test that he gets out of all of them.... It takes a few days to get the results but it seems like months. But my husband and I can both take a big sigh of relief knowing that Makhi as no return of the Neuroblastoma...OMS is still our biggest battle and Makhi is starting some new treatments for OMS. Makhi will now start weaning off the ACTH AGAIN .... and he has been put on a new drug called Methotrexate. This is a steriod sparing drug that they use for children with other auto immune disorders and it helps suppress the immune system. We have also discontinued the IVIG for now.. THIS IS A HUGH STEP in Makhi's treatment and I am asking for all of you to pray for him that this works. Makhi has fought this disease for going on 3 years next month...It has been a long battle for him and our entire family. I have been praying for Makhi and begging God to allow Makhi to be successful once and for all w/ his treatment of OMS. I also thank god everyday for all that he has seen Makhi threw.

I have also just learned of a child (Reid Nealson) this week who lost his battle with OMS on Nov 18,2009. After being treated for OMS children become very immune-compromised and a simple infection can be deadly ,the children lack the ability to fight of infections during OMS treatments. My heart is breaking for the Nealson family and I would ask that everyone pray for them as they face the lose of there son who was taken way to early...:(
If you want to read more of Reid you can but going to his carebridge page

www.caringbridge. org/visit/ reidnelson
Take Care

7.8 MILLION DOLLORS RAISED BY PSU STUDENTS 4 THE FIGHT AGAINST PED CANCER

2010-03-07T18:09:00.000-08:00

Roxy,Natay,Adrian,Cierra,Makhi,Tara,Paul,Kourtney

Wow it has been along time since I have had the time to sit down and update Makhi's site. Time is always a issue around this house. LOL

The picture above was taken at THON 2010 and it was another wonderful year.7.8 MILLON DOLLARS RAISED!!!! The NAACP was Makhi's sponsor again this year and they are just wonderful. If you don't already know what THON is it is yearlong effort to raise funds and awareness for the fight against pediatric cancer. All the money is raised by Penn State Students.It is the largest student-run philanthropy in the world!!!! It is nothing else like this....You would just have to be there to see!!! If you wanna learn more about this you can go to THON.org.

As far as Makhi he has taken another backslide. We are unable to get Makhi off the ACTH :( ..... Every time we get him to .06 or lower he starts to relapse.. Since our last visit with Dr.P in Springfield we have gone from 1.6 on ACTH to .06 but getting him off the drug completely has just not happened. Our last visit to Dr P was in March of 2009 and the issue at that time was Makhi T-Cell were still dis regulated so we did 3 rounds of chemo and that seemed to work for awhile. He was holding steady at.06 on ACTH and was doing well but in the last month I have seen allot of Makhi OMS symptoms coming back. His behavior is getting worst and he is having alot more rage attacks lately.

The most frustrating thing about this is I can't seem to be able to get the help I need for Makhi here in Pa. So on May 3rd 2010 Makhi and I will be flying back to Springfield IL. Hopefully we will know then what it is that is causing the OMS to return. I have a feeling that it is his T-cells and no longer a B-cell issue at this point. I could be wrong but that is what my gut is telling me.

Makhi also has to go for testing next week to have his echo cardiogram and a bone density test done.These test are done to make sure that the steroids (ACTH) that he takes are not effecting his heart and bones. It is so hard to believe that Makhi has been on ACTH going on three years soon. We have to get him off this drug so I hoping for some real answer as to what is next after our visit to Springfield.

On a better note Makhi is a fighter he always has been and he trys to remain positive. I said this before and i will say it again. I have learned so much from my little man. He has taught me about never giving up ...He has also taught me to have patients that i thought i would never have LOL ...But the most important thing he taught me is to have faith!!!! I still believe that he is in the most important fight of his life and he will come out a winner....

That's all for now I will keep you all updated on Makhi as soon as I have some real answers

Where does the time go......????

2009-12-19T19:39:00.001-08:00

It is hard to believe that it has been so long since I have updated Makhi's site. It just crazy how the weeks and months have slipped away!!!

Since my last update allot has happened. Makhi's medi port line snapped. Back in October when we went for a IVIG treatment the nurses were unable to get any blood return when accessing the medi port so Makhi was sent down to get a X Ray which showed the line had snapped in half. So the 2nd week in Oct Makhi has surgery to remove it. Makhi's oncologists and I both agreed it would be best not to replace the port that he had. Although we may in the future have to replace the port for now his little body needed a break from it. He had the port in for almost 3 years and it lasted much longer then it should have.

Makhi also has celebrated his 5th Birthday Nov 20 !!!!!! All he wanted for his Birthday was a talkin Thomas and all I wanted was him to be off of ACTH (steroids).
Well needless to say Makhi got his Talkin Thomas and Mommy was unable to get Makhi off the ACTH without some tremors in his hands and some bad bad mood swings. So for now we have had to go back up on ACTH .08 and we are going to hold steady there for awhile. His little body is just not ready.... Which brings us back to WILL MAKHI NEED MORE CHEMO????? ARE HIS T-CELLS JUST NOT RIGHT YET? Who knows at this point?? It is the wait and see game that I HATE.... Since the increase back up on the ACTH he seems to be doing better the shakes in his hands are getting better and so has his behavior.

Makhi has made HUGH strides at school this year... Hooray for Makhi!!! He is learning so much at school this year he has even made himself a best friend at school. The 2 of them are so cute together. Makhi even wanted to go Christmas shopping for his friend this year so i let him go and get him some gifts. You should have seen his wrapping of the presents....OH MY LOL I let him do it all by himself and he was so proud of himself.It was very cute needless to say LOL....

THERE ARE SOME FAMILIES THAT ARE IN NEED OF OUR PRAYERS AND THOUGHTS

I received a phone call last week from my grandmother telling me that my step mothers best friends granddaughter was just DX with stage 4 Neuroblastoma.

ISABELLA RINIER is her name and she is just 3 years old . Isabella was DX with stage 4 Neuroblastoma 2 days after her third birthday. Bella has a tumor on the adrenal gland of her left kidney. Of course there are cancer cells elsewhere, also. She has started intense chemo and will have a stem cell collection done this coming week. After chemo, she needs to have the tumor removed and then a stem cell transplant.
Somewhere in all of this , she will also receive radiation. It has been heartbreaking to say the least. The family of Isabella is staying positive and relying on the power of prayer. She is on many prayer chains and I would love if we could add her to more

Also my best friends sitter Kayla is due to have a baby boy around Christmas and he has been diagnosed with Lethal Multiple Pteryngelum, it's a rare genetic disorder and the doctors give him almost no hope to live, but he's... growing and his heart is beating so I would also ask everyone who reads this blog to pray for Kayla her son and family.There is power in prayer!!!

My family and I wish everyone a Merry Christmas and a Happy and Healthy New Year!!!!

Another Step Closer To Getting Makhi Off ACTH

2009-08-02T19:47:00.000-07:00

I just wanted to update everyone on Makhi. Things seem to be going to smoothly with Makhi's withdrawal from ACTH. I am more than happy to report that he has moved from .08 to .06 today and i have seen so signs of tremors or eye movement in Makhi. KNOCK ON WOOD!!!!! I could not be happier and I know what a blessing this is. Makhi has fought so hard to get where he is today and I could not be a prouder mom.

His speech has come so far.... The thing he keeps spitting out of his mouth is amazing to me. Boy his speech therapist is really gonna be happy when Makhi returns to school Aug 31.

Makhi has been spending his summer learning to ride his bike,swimming at the pool & has gone to the lake a few times. He also went for his 1st canoe ride with my best friend Jen and her son Austin. He was so proud of himself. He was sure that me and his sister where watching him the hole time...LOL He has also accomplished potty training with also is another hugh step in his life. When i really sit back and think about all he has accomplished in the last year it truly is amazing.

There is a little boy named Caden is cererbrating his 4th birthday today. His condition is not getting better. Caden and his family are in desperate needs of prayers right now. Here is a note that his mom has posted to his carebridge page

Thursday, July 30, 2009 4:25 PM, CDT

*

Hi to all. Thank you so much once again for all your prayers, calls, email, text, and ongoing support. This is a strange place in our lives to be - not really knowing what each day will bring, and yet, isn’t that really how all our lives truly are. Anyway, we are thankful that God has blessed us with all of you.

*

As I type this update, Caden has finished his chemo for this go-around, and is receiving a blood transfusion due to his really low red blood cell/hemoglobin counts. After this, he will be able to go home and get ready to celebrate his birthday on Sunday!!! It will be a small celebration since his Make-A-Wish (which the boys still don’t know about) will be the following week. Please be in prayer that all goes well to allow the trip to goes as planned. Caden’s blood counts are due to be their lowest right when we plan to leave. But, as God would have it, I’ve been in contact with Dr. Elnis, and oncologist in Orlando who said that they are use to seeing Make-A-Wish kiddos when something comes up, and so I have his groups phone number.

*

So, the plan…our plan…our hope…(is it God’s plan)…Caden saw the orthopedist on Tuesday, who would like to put pins in Caden’s shoulder and a screw in his left hip in order to stabilize these areas to prevent breaks and/or further breaks. The concern is whether we put Caden in “more” pain at this questionable time in his life and whether his little body can handle the healing process. If we do go ahead with this, he will have surgery the week we get back from Orlando. We’ve also been in touch with Dr. Sholler out of Vermont, who said that she felt Caden qualified for one of her clinical trials. So, the hope is that the following week of August 24th, he will begin the treatment protocol for this study. Please pray that the chemo that Caden is currently receiving will shrink the mass we found under his jaw (possibly a lymph node or gland) as well as any other masses we cannot see. Because this is not the “full strength” chemo he would normally receive, please pray that it is effective at stopping the cancer.

*

*

We are truly in F.ROG. Mode (fully relying on God). There is nothing we can do to save Caden. If Caden’s life is extended it will only be because God moved all things, all treatments into place at the right time to work in his little body. Please continue to pray for Caden and us. At no time do we want to bring additional and unnecessary pain to him just so he can stay with us. Thank you for everything.

*

(Just a little background on today’s chosen verse. On the Friday we were in New York, after the disappointing news received, Caden and I just spent the night in our room. At one point, I think Caden could tell I was sad, even though I try to hide it from him as much as possible. At some point the looked at me and said “I don’t want to be dead. I want to stay with mommy and daddy.” This made stomach drop and my heart ache. I told him that if he was willing to fight this cancer that daddy and I would fight right along side him. We would fight until he said he was tired of fighting. He looked at me and said “Why God not fight for me?” I was speechless not knowing how to explain this to a 3 year old when I wasn’t sure myself. Fast-forward to last night. Caden and his brothers were watching “Kung Fu Panda”. At the end, Caden was doing his version of kung-fu as he sang the song. There’s a part in the song that says “not only do you have to fight, but you have got to win” which I told Caden he had to against the cancer. He turned to me and said while karate chopping, “With me and God, we beat this cancer.” Sweet boy.)

*

12 When the angel of the LORD appeared to Gideon, he said, "The LORD is with you, mighty warrior." 13 "But sir," Gideon replied, "if the LORD is with us, why has all this happened to us? Where are all his wonders that our fathers told us about when they said, 'Did not the LORD bring us up out of Egypt?' But now the LORD has abandoned us and put us into the hand of Midian." 14 The LORD turned to him and said, "Go in the strength you have and save Israel out of Midian's hand. Am I not sending you?" 15 "But Lord " Gideon asked, "how can I save Israel? My clan is the weakest in Manasseh, and I am the least in my family." 16 The LORD answered, "I will be with you, and you will strike down all the Midianites together." Judges 6:12-16

*

Hugs,

Lexie

PLEASE CONTINUE TO PRAY FOR CADEN AND HIS FAMILY!!!!! YOU CAN KEEP UP ON CADEN BY VISITING http://www.caringbridge.org/visit/cadenledbetter

THANKS FOR CHECKING IN ON MAKHI AND I ASK THAT EVERYONE PLEASE PRAY FOR ALL THE CHILDREN FIGHTING THIS TERRIBLE DISEASE NEUROBLASTOMA AND OMS

Summer 2009

2009-07-16T04:00:00.000-07:00

Sorry there has been such a delay in an update on Makhi. I am happy to report that Makhi is now down to .08 on ACTH and going strong...(Knock on Wood). It does take Makhi about a week after the .o2 withdraw to adjust but he is doing well.

Makhi's speech has really come along way this summer. I can't wait for him to return to school so that his teachers can see how much progress he has made. He will be returning to the same class room this year with the same teacher so that is a relief for me and for Makhi at leasts it saves me having to teach them all about OMS and they already know Makhi and how to handle his behavior.

Makhi's behavior still continues to be our biggest challenge! So over the summer we have tryed some different things. He is currently under the care of a wonderful behavior specialist. We also did a trial run of Aderall 5mg which helped a little but left Makhi very irritable so that has been discontinued and now we are trying Coldine and that seems to be working a little better without all the side effects.

We are approaching the 2 year mark of the OMS and Neuroblastoma DX. On July 18 2007 is when we discovered that our baby boy had cancer and one of the rarest neurological conditions in the world (1 in every 10 million children). When you really sit back and think about it you have a better chance of winning the lottery than becoming DX with OMS and Neuroblastoma. Crazy ......

Makhi has learned so much this summer he continues to do well with potty training he is learning to swim,riding his bike and he has even taken interest in dressing himself. He wants to do everything himself even pour his own drinking and make a mess all over the floor..LOL.....:)

He makes me proud he is such a fighter and has been since the day he was born. He becomes frustrated sometime because somethings take him a little longer to catch on to than children his own age but he never gives up he presses on. He is my hero and everyday he reminds me what life is really all about and never to give up!!!
He will beat OMS and beat all the odds stacked against him I just know he will.

I am still praying for all the OMS kids that are still fighting this disease along with Makhi.

Tara

Makhi is done with his 1st year of school

2009-06-05T07:48:00.000-07:00

I just thought I would share some pictures of Makhi. Makhi still is doing well he went down to .10 on ACTH yesterday!!! He is out of school now and will be returning to head start again in Aug.
That is all for now!!!
Hope everyone enjoys there summer

SUMMER IS ALMOST HERE !!!!!!!!

2009-05-28T10:11:00.000-07:00

I am happy to report that things are going well with Makhi. He is getting ready to go from .12 to .10 on ACTH. I don't want to say anything to soon but he is doing well with the withdrawal of ACTH. He also completed his 30th round of IVIG a week ago. His oncologist was pleased with him. His behavior is getting better also. We are now working with a behavior specialist and we have started the 123 Magic program with Makhi and wow it seems to be working. He did have a melt down in the store yesterday and of course everyone in the store was staring but that goes along with having kids and ex specially a kid with OMS.

Next Tuesday is Makhi's last day of school. Then we will be hitting the pool everyday. Oh my another year of fun chasing Makhi around the pool. I hope maybe this year he will fear the water a little more. He loves to swim and it does him get rid of all his energy.

Cierra and Nataly last day of school is June 5 and then the leave for camp for a week. They go to a camp for siblings of children with cancer. They love going!!! They had so much fun last year and can't wait to go back. Cierra has actually kept in contact with some of her friends that she meet last year. They are both ready for school to be out.

Next school year Makhi will be going back to Head Start and Cierra will be in 5th and Nataly will be in 4th. Time is really flying. Seems like yesterday the girls where in kindergarten.

I hope everyone enjoys the beginning of their summer vacation!!!
Tara

Prayers are needed for Caden's

2009-05-14T10:30:00.000-07:00

I wanted to share a story of a little boy named Caden's! He and his family are in desperate need of prayers right now. Caden's had a bone marrow biopsy and it was positive for cancer. All three scans came back positive for disease progression and Caden has no back up stem cells. Caden was DX with Stage 4 Neuroblastoma before he was even 2. Please pray for this family as they face this ugly disease called Neuroblastoma and that Caden can reach remission once again!
You can visit Caden's website @

http://www.caringbridge.org/visit/cadenledbetter

WHAT IS NEUROBLASTOMA
* Neuroblastoma is a children’s cancer diagnosed in approximately 500 to 1,000 children per year in the USA. Neuroblastoma is a complex tumor of the sympathetic nervous system, a condition that has been known for 35 years. Its frequency is second only to brain tumors and it is seldom seen in children over 14 years old.

The median age for tumor discovery is two years, and it occurs somewhat more in boys than girls. Like most cancers, its cause is unknown. It is extremely difficult to diagnose in small children, and once diagnosed, its progression is often rapid, and very painful.

The disease is diagnosed from stage I (a localized tumor confined to one organ or area of organ) to stage IV (solid tumors that have spread to several organs or parts of the body). Depending on the stage of the disease, treatment may be limited to tumor removal surgery, or may be as extensive as tumor removal surgery combined with chemotherapy, radiation, and bone marrow transplants.

- The Neuroblastoma Children's Cancer Society

http://www.neuroblastomacancer.org

The 2 Year Anniversary Of The Onset Of OMS

2009-05-01T06:30:00.000-07:00

Yesterday my oldest daughter turned 10. It's so hard to believe that 10 years has passed since I gave birth to my beautiful baby girl! She is not a baby anymore though she is growing up so fast and boy does she have a mind of her own! She reminds me so much of myself when I was younger she independent,Strong headed, hot headed (just like her mama)free spirited,loving,kind,artistic(the artistic part did not come from me )LOL and so much more. I just pray that she can keep all theses great quality's throughout her life and she does not allow life's ups and down to change her.

Cierra is the one in the middle

Today is the two year anniversary of the onset of OMS. This day will never be forgotten. Makhi went from being a completely happy and health child to having small tremor in his hands and his eyes started darting. I thought to myself I wonder what that is. So I took him to the doctor and he said that it maybe because Makhi is still weak from the Rota Virus. The week before the onset of OMS Makhi has been hospitalized for the Rota Virus because of severe dehydration. Never would I have imagined that a week later my son would not be able to walk, talk or even hold his head up. This week and the 12 weeks that followed were hell on earth. Makhi spent 12 weeks in and out of the hospital having every test done MRI EKG blood work after blood work trying to figure out how my son had gone from a picture of health to this.

Doctors were baffled by his condition. We did get a diagnoses of post viral cerebelltis but all of Makhi's symptoms did not match post viral cerebelltis. The thing that stuck out the most to be was his eye movement. The eye movement is not a symptoms of post viral cerebelltis. So the search was on to figure out what was wrong with my son. Although the doctors kept telling me that post viral cerebelltis is what Makhi had I NEVER believed it.I searched day and night for the answers to my son condition.

I took Makhi is a local pediatric opthamologist who confirmed my worst fears. Makhi did not have post viral cerebelltis and he would not get better in 4 to 6 weeks like all the doctor kept telling me. What he did tell me is he tough Makhi had Neuroblastoma. That is all I needed to hear to send me into a complete panic. I was not sure what Neurobastoma was but I knew that anything with OMA on the end meant cancer and I was a mess. The opthamlogist called Makhi pediatric doctor and he told him that he had tested twice for Neuroblastoma while we where in the hospital (which i did not know about) and both times they came back negative. Now the test is done though urine. So I left the office feeling so confused but I took Makhi directly to the hospital for another urine test and again the test came back negative for Neuroblastoma.

After returning home I spent the hole night reserching Neuroblastoma and that is when I came across Neuroblastoma and OMS. Once I read the symptoms of Opsoclonus Myoclonus Sydrome I knew right away that is what my son had. Now it was up to me to convince the doctors to do a full body MRI to look for a tumor.

It was July 16,2007 and I refused to go to bed that night until I had some answers my son could not go on like this ANYMORE i wanted answers and I wanted them NOW.
I contacted Makhi Neurologist and he was unable to see him so I demanded to see someone eles. There was another neurologist willing to see Makhi but I would have to wait to see him first thing the next morning. He came in to see Makhi before the office opened because he was completely booked that day.Well after seeing him he agreed that we should do a full body MRI. On July 18,2007 I took Makhi to the hospital and after about 2 hours they came out to get me. The weird thing was they did not have to tell me the found a tumor it was written all over there face. I went back to the room where they did the MRI and there it was. A tumor on the back of his spine. I not sure what happened after that because my ears shut down. It was almost like it was a bad dream and I was waiting to wake up. The only thing I could hear was my son crying in the room next door. I walked over to the room with my son got him ready and walked out of the hospital. That walk to my van was the longest walk I have ever made in my life! I could not believe the words cancer where even said to me about my son. What happen to post viral cerebellitis? What happen to Makhi getting better in 4 to 6 weeks? Now I would have to make the drive home and share this news with my husband and 2 daughters.

We met with Makhi's oncologist the next day! We would then spend the next week in the hospital having the tumor taken out. The week after that we left for Springfield IL to meet with the Dr Pranzatelli (OMS DOCTOR).

This is the frist Chapter to the onset of OMS! The story goes on and on but that is enough for now.

Thank you for checking in on Makhi!

Rest In Peace Little One

2009-04-19T10:03:00.000-07:00

We all prayed for miraculous healing up until the end but God had other plans for this sweet little boy Braeden Burgess. Braden was called home April 18,2009 @ 2:27am. Braden was dignosed with Stage 3 Neuroblastoma & Opsoclonus Myoclonus Syndrome in March of 2007

Braeden was an exceptional, courageous little guy who fought a good fight. Now he is free of pain and he has taught us all what real courage is. May God hold and comfort the Buergess family during these difficult days and all the days to follow.

Please pray for the Burgess family as the face a extradordinary diffcult time.
You can visit Braden carepage by visiting the link below

http://www.carepages.com/carepages/BraedenBurgess

God Bless you Braeden
Tara

Children Across The World Fighting Opsoclonus-Myoclonus Syndrome & Neuroblastoma

2009-04-14T07:35:00.001-07:00

PLEASE CLICK ON THE LINK BELOW AND WATCH... AFTER YOUR DONE PLEASE PASS IT ALONG!!!!
http://www.youtube.com/watch?v=9WNdquhWdkA
THANK YOU

Happy Easter

2009-04-14T06:45:00.000-07:00

Hello to Everyone.... Now that Easter & Spring break is over I have some time to do an update on Makhi LOL......

Makhi is doing well right now the bu last 2 weeks for Makhi where no so well:(...
On April 4 Makhi came down with a terrible viral infection and became very sick quickly 20mins before he became sick he was playing and acting fine.. He started vomiting and having diarrhea an a very high fever.Also Makhi started having tremors in his hands and legs. Well needless to say I was so nervous and scared out of my mind I laid in bed with him all night praying to god to please don't let Makhi relapses .. Thankfully by Sunday morning the tremors had left and he was able to walk again and by Monday the fever was gone also..... God answer my prayers!!!!

For you that don't know a simply viral infection like Makhi had can cause a OMS child to have a relapses so as you can imagine it is quite terrifying when he becomes sick.. The good thing is the fever left within 24 hours but we are still dealing with the increase of irritability and bad behavior.. This is also something that is somewhat normal for children with OMS to have a increase in behavior problems after they have been sick. Makhi's OMS doctor said that the behavior problems should get better after about 2 weeks..Well at least return to his base line. We always have had behavior problems since the onset of OMS but they really increase after he has been sick.

Well off to the the good news !!!! Makhi is POTTY TRAINED!!! Yeah for Makhi... He is doing so well. His dad made his a Thomas the Train Potty chart. It has 8 stops on it and when Makhi goes the the bathroom 8 time then he gets a new train. It really seems to be working but I think Adrian and I will go broke soon from having to buy so many trains LOL ....

Also we have got Makhi weaned off Trazadone .This is a med that Makhi used for sleep. He is now able to go to sleep without any meds that help him. Now he does not sleep though the night without waking up anymore but he usual just ask for a drink and then he goes right back to sleep... I am so happy that we were able to get him off Trazadone.One drug down and many more to go LOL.....

School is going well for him!!! He was excited about going back to school today I think he really miss his teacher Mrs.Diana... He really is so bonded with her he talks about he all the time. When I ask him who his friends are at school he always tells me Mrs. Diana is his friend... He is so funny!!!LOL His speech is really coming along well.

Well that is all for now. Thank you for checking Makhi's update. Please keep praying for progress and no setbacks for Makhi.

There is a little boy name Braeden Burgess who is not doing well and he needs everyone prays right now.You can follow his story by clicking on the link below.
http://www.carepages.com/carepages/BraedenBurgess/updates/2085125?client_code=devos&ipc=mur

PLEASE PRAY FOR HIM AND HIS FAMILY THEY NEED LOTS OF PRAYS RIGHT NOW !!!!!

Tara

Back from Springfield IL with GOOD NEWS!!!!

2009-03-20T08:39:00.000-07:00

Hello Everyone
I have to apologize that it has taken me so long to update on Makhi's visit to Springfield but I swear things are just soooo busy around here. Between doctor visits which are like everyday and the the girls with all there activities I fine it hard to have the time to do anything.

Now off the the good news.... Dr Pranzatelli thoughts are that Makhi is doing great and has responded wonderful to the chemotherapy!!! He also feels that Makhi appears to be in neurological remission. Praise the LORD..

Now off to the scary part... Makhi is coming down off ACTH and there is the possible of a OMS relapse on our way down off the ACTH.... I am choosing to believe that this will NOT happen. He has come so far and I hate to see him any set backs. So we need alot of prayers right now that Makhi can continue to make progress WITHOUT ANY RELAPSES... If all goes well Makhi will be off ACTH by his 5th Birthday. What a wonderful gift that would be.

Dr Pranzatelli would like to continue Makhi on IVIG monthly and the taper of ACTH by 0.02 monthly.

Makhi had a IEP meeting at school yesterday and his teacher think that he is doing wonderful. It is nice to look at all Makhi progress on paper although I see it everyday. His speech is coming along nicely. About 80% of it is understood by an adult. He has all the words that a child his age should have but he still continues to struggle with articulation. Oh well it will come in time. His behavior is better also and he is requiring less cues as to what he is suppose to be doing next. He is sharing nicely with friends he knows his ABC's he knows all his colors and he is about to count to 15. He makes me so proud everyday.

I would love to share a story with everyone! When Makhi and I arrived in Springfield we were told that there was a 18 year old girl who was coming to see Dr Pranzatelli.
After meeting her I felt very sad. It was a rude awaking to just how far OMS treatment has come.See I guess 18 years ago they did not have the treatment that they do today. This little girl was never treated for her OMS until the age of 16 and there was soo much brain damage done. I will never forget this little girl. My heart goes out to her mother and her. So with that said I just find myself hoping for a cure but at the same time I am VERY thankful that we have the treatment that we do today. My worst nightmare is what that little girls mother has had to live threw. I have gained alot of strength from this mother.

Thank you for checking in on Makhi and I will update again soon
Tara

2009-03-09T19:40:00.001-07:00

On Our Way To Springfield IL

2009-03-09T11:45:00.000-07:00

Hello to All
Tomorrow Makhi and I leave for Springfield IL. Our flight leave from the Baltimore Airport @ 8:00 AM in the morning and then we fly home Thursday night.

I am a little nervous we only have 19 mins to get off our flight in Atlanta and get on the next flight to go to Bloomington IL. Oh I hope we don't miss our flight!!!!!
I have a plan.. I bought a Thomas the Train and when I get off the plane I am going to tell him if he runs I will give him the Thomas the Train . LOL!!!!

Makhi got to spend the day at the Strausburg Railroad with his Daddy and Great Grandmother. He had the best time! He loves his trains!!

I will be sure to update you when we return from Springfield IL. Hopefully I have great news to share with you.
Tara

$7,490,133.87 For The Fight Against Pediatric Cancer

2009-02-22T18:46:00.000-08:00

This is a picture of THON 2009

You can visit www.thon.org for more information

Let me just start by saying the Makhi and the rest of the family got to be apart of something this weekend that was just amazing!!!!!!!!!!!!!! We spent all weekend in State College and were apart of THON. This was our 1st year so needless to say we did not know what was in store for us.
We got to spend the entire weekend with thousands of PENN STATE STUDENTS who spent the entire year raising money to help find a cure to childhood cancer. THON was hosted at the Bryce Jordan Center. This is like nothing that you have ever seen and I can't even explain it other than saying to was out of this world. The place was filled with so much love and hope it was like nothing I have ever seen!!

The NAACP is the student organization that Makhi was paired with and we love them. They have been wonderful to Makhi and our entire family and we are so please that we have them .I would like to send out a special thanks Mark Burnett and Nana Acheampong.The two of them danced 46 long hours for Makhi this weekend. The dancers can not sit down not even to eat they must stand and dance the entire 46 hours.... We also got to meet more of our family from the NAACP this weekend and they were all so nice. Gladys, Kourtney, Serena, Ashley and so many more of you I just can't remember all your names. My kids just love you!!!
The kindness of complete strangers is just amazing!!

THON is a year-long effort that raises funds and awareness for the fight against pediatric cancer. There is 15,000 PENN STATE students who spend all year raising money for the Four Diamonds

In 1978, THON partnered with The Four Diamonds Fund at Penn State Children’s Hospital, and designated The Fund as the sole beneficiary of THON’s fundraising efforts

The Funds raised from THON offsets the cost of treatment that insurance does not cover, as well as expenses that may disrupt the welfare of the child. Fund supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute.

THON 2009 raised a grand total of 7,490,133.87!!!!!!!!!! That is just unbelievable!
$7,490,133.87 For The Kids!

"
As children afflicted with the horrible disease of cancer, and those who love them, look forward to the future, what they see can be very frightening. Therefore, dreaming forward takes courage, and this logo pays tribute to that. Blue is used as the primary color because it creates an emotional association with courage and nobility. The young child wears Sir Millard's helmet and marches towards a shooting star. Sir Millard's helmet is not only a direct reference to the inspirational origins of the 4 Diamonds Fund, but a metaphor for being mentally and emotionally equipped to fight the battle of cancer. The brave child points towards the star, a universal symbol of hope, while walking up the lettering of the theme of THON 2009, which takes the form of stairs. This is a reminder to the participants and supporters of THON that if we stay focused, and keep working hard on finding a cure, then the dream and reality of a cancer free world can someday become a reality."

-Jay Giles, Logo Designer

What A Weekend

2009-02-10T18:33:00.000-08:00

What a weekend it was we have been so busy!!! I want to first update everyone on Makhi's scale down of ACTH. We have made our first scale down of ACTH. After hangin steady at .20 for 7 months we are now down to .18 and he seems to be doing well. Our next scale down will not be until March 1st and then we will be going down to .16. So we are just crossing our fingers and praying allot!!!

Makhi had a wonderful weekend his THON family.They came the hole way down from PENN STATE to spend the day with him and his sister at his favorite place on earth CHUCKIE CHEESE. They were wonderful!!! They really SPOILED the kids. They brought gift for the kids and even for my husband and I. We are so excited to spend our first year at THON next weekend. We leave for PENN STATE next Friday.

Also Cierra got to spend the evening alone with her daddy for a father and daughter's Valentine's Day Dance. They had a wonderful time they got to dance the night away and they even got there picture taken I can't wait to get them back. She had so much fun she is already talking about going back again next year. She is really growing up and turning into such a little lady!!!

I found this to be very uplifting!!!

Ode to Special Moms
Most women become mothers by accident, some by choice, a few by
social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped
children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments
for
propagation with great care and deliberation. As he observes, he
instructs
his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie,
daughter,
patron saint, Cecilia.

"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."

Finally, he passes a name to an angel and smiles, "Give her a
handicapped
child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother
who does
not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a
sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.

"I watched her today. She has that feeling of self and independence
that is
so rare and so necessary in a mother. You see, the child I'm going to
give
her has his own world. She has to make it live in her world, and
that's not
going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has
just
enough selfishness. "

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a
child
less than perfect. She doesn't realize it yet, but she is to be
envied.
She will never take for granted a 'spoken word.' She will never
consider a
'step' ordinary. When her child says 'Momma' for the first time, she
will
be present at a miracle and know it! When she describes a tree or a
sunset
to her blind child, she will see it as few people ever see my
creations.

"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will
never
be alone. I will be at her side every minute of every day of her
life,
because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair.

God smiles. "A mirror will suffice."

- Erma Bombeck, May, 1980

That is all for now. Good Night and God Bless
Tara

We start the scale down on ACTH!!!

2009-02-05T06:05:00.000-08:00

Hello To All
I just wanted to update everyone on Makhi today. I am happy to report that we have made a small scale down off of ACTH (steroids)from .20 to .18 with no setbacks. I realize that this is a small scale back off the steroids but I have learned to celebrate the small accomplishments. Makhi has been on .20 since July of 2008 and we have kept the steroids at .20 until January of this year. We have received the ok to start with the scale down of the ACTH .02 per month. This is a scary to me and yet exciting at the same time. I am praying everyday that we can successfully wean him off this medicine without a relapse. The chemo has really seemed to help Makhi.

Our trip to Springfield IL will soon be here. We are leaving for IL March 10 2009 for our 6th visit with Dr.Pranzatelli. I am looking forward to this trip.

The girls are doing well. Nataly is busy selling girls scout cookies and Cierra is getting ready to start her indoor soccer season. The both just got there report cards and they both make me so proud. Cierra really has come around this year and she brought home A's & B's and Nataly is making so much progress in reading. Her teacher called me at home yesterday to tell me they just did a foresight test and she scored higher then she ever has so I could not be happier!!!! Hooray for my girls.

Makhi is still doing well in school I just had a meeting with his teacher and they are pleased with him. They are happy with all that he has learned this year. He is now able to say all of his ABC's & he knows all his colors and able to count to 17 without error. They are preparing Makhi to become Kindergarten Ready. Now Makhi will be be in Head Start again next year before going to Kindergarten so he should be more than ready. He will be one of the older kids next year in Head Start. Right now he is one of the youngest in his class. His speech is really coming along! Some days are better than others but for the most part he is doing well. He has even learned to say some not so nice words like stupid and poppy so we are working really hard with Makhi to get him to understand they are not nice words. It seems the more we talk to him about it the more he says it LOL......

THON is going to be here before we know it. We are leaving Febuary 22 for State College for the weekend. This will be our first year and we are so excited!! THON, which is short for the Penn State IFC/Panhellenic Dance Marathon, is a year-long effort which raises funds and awareness for the fight against pediatric cancer. With the support of students from all across the commonwealth of Pennsylvania and THON Alumni all around the world, they continue to make great strides towards finding a cure for all childhood cancers. Our efforts culminate with a two day, no sitting, no sleeping dance marathon during the third weekend in February.The Four Diamonds Fund is the beneficiary of THON’s fundraising efforts. The Four Diamonds Fund was established by Charles and Irma Millard after the death of their son, Christopher, who was diagnosed with cancer at the age of 11. Because of THON’s support, The Fund is able to offset the cost of treatment that a family’s insurance won’t cover, as well as provide for other expenses that may affect the welfare of the child.
The Fund also supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute.

Well that is all for now!!!! Please keep praying along with me for Makhi and all OMS kids....

A Early Round Of IVIG

2009-01-22T19:52:00.001-08:00

Makhi spent another long day at the hospital. He has had a cold for the last four days and his cough has become bad so his oncologist and I decided to go ahead with IVIG a few days early to help him fight this cold that he has. She also prescribed him a inhaler to help open up his airways so that he can sleep at night. He has spent the last 4 nights up unable to breath because he can't stop coughing. Dr Comito also order a chest X-Ray be done right after we were done with IVIG today just to be on the safe side. On the bright side of all this we have not seen one tremor in his body. I am thanking GOD for that everyday. In the past before Cytoxan (chemo) if he even got a runny nose he would start with tremors. So I am very pleased with the fact that he has been able to combat 3 colds in the month without any signs of tremors or eye movement that is something worth celebrating!!! AMEN!!!

We are getting ready to make our 5 trip to Springfield IL to see Dr.Pranzettli March 10,2009 and as long as Makhi stay on the same track he is on now he will not have to have a spinal tap done he will just be seen for a clinic visit. Also I spoke with Dr P yesterday and we are going to start attempting to wean Makhi off the steroids again. He is at .20 now and we will decrease .02 per months so that means Makhi will be on them another 9 months but he wants to do a VERY SLOW WEAN!!!

Well that is all for now. Please Keep praying for Makhi(& ALL OMS KIDS)
that he keeps making positive steps to remission!!!
Love Tara

"Once you choose hope, anything's possible." ~Christopher Reeve

2009-01-13T20:22:00.000-08:00

Oh my!!!! It has been along time since I update and I am sorry about that things have just been wild around here.

I can't believe Christmas and the New Year have past so quickly. We had a wonderful Christmas with the kids and we had alot of fun ringing in the New Year with them also.

Makhi is doing really well. As stange as it may sound the Chemo seemed to really help him. It seemed to just get him back in blance.His speech is really coming along and he behavior is getting better. He is back to school and seems to be doing great. He has started riding the bus to and from school now and he really thinks that he is all grown up now. Every morning when he gets on the bus he goes and picks one of my artifical flowers out of a pot I have outside and gives it to his teacher Mrs.Dawn and then he sits down on the bus and buckles his seatbelt. He has even started put on his own jacket on and zipping it up all by himself. We have really started to work hard on Potty Training with Makhi. This is definatly going to take time. It is so hard for him because of all the meds that he is on it makes it so hard for him to control his bowels. Oh well on step at that time right....

Well I got a call this week from Dr Pranzetelli office and me and Makhi will be flying out to Springfield IL the 1st week in March. I am praying this trip will bring better news then the last time we were out there. I am praying so hard everyday that the 3 rounds of chemo that Makhi just did is all it takes to get this T-Cells back in order. But it will take awhile to see if the great results we see now will last. Makhi has caught 2 colds and I have seen NO SET BACKS well maybe a little behavior issues and that is all. We have so much to be thankful for right now and I pray hard everyday that Makhi keeps on the same track he is on now. God has been good to him and I believe that he is right there seeing us though this battle everyday.

As far as the rest of the family ...Adrian is still laid off and just job hunting so that is STRESSFUL I hope that a good job comes his way soon. Cierra is so busy with Soccer she is getting ready to start her indoor soccer season. It is so hard to keep up with now that she is playing year round. Nataly is enjoying school and girlscout and she is gettting ready for her big cookie sale.

Adrian and I just celebrated our birthdays Jan 9 and Jan 12 oh my we are getting old. Were have all the years gone. He turned the big 30 and I turned 31 OH NOOOOOOOO.

Well I gotta head to bed we all have a supper busy day tomorrow....
God Bless
Tara

Merry Christmas To All

2008-12-23T22:01:00.000-08:00

I just wanted to update everyone. Makhi has finished his last round of chemo yesterday. I am so excited that this is over for him. Now we just need every ones prayer that this will work and correct his T-Cell deregulation problem. He has fought so hard trying to beat OMS. He amazes me everyday. Today he attended his sister Christmas concert with me and his dad and he has such a wonderful time. It was so nice to hear him sing along with all the songs they were singing. Jingle Bells is his favorite.

Cierra and Nataly looked so pretty today for there school Christmas concert. There daddy better watch out because the boys will be knocking at the door in a few years for them. LOL......

I wish everyone a MERRY CHRISTMAS and enjoy your time with your family's because that is what it is all about. I love spending time with my family and ex specially during the holidays.

LOVE THE WOODMANS

A Long Night @ The ER

2008-12-15T18:45:00.000-08:00

Hello Everyone
I hope everyone is ready for the holidays because I am NOT!!! Oh well life goes on LOL.

Makhi has been sick for about a week now with a cold. Well Friday night he started with a fever. Ever since then we can only keep the fever down with Tylenol every 4 hours.Last night I got worry he started with a high fever again so I took him to the ER. They took some cultures and we haven't got the results back yet they take 24 hours to get them back. They also did a chest X-Ray and that looked fine. They wanted to rule out pneumonia.

Today he still has a fevers and it really went up later this evening so I called the doctors now I have to take him the the Med Center in the morning for some more blood work. He could have just got a viral infection but I take no chances with Makhi. Because of taking steroids it can mask a infection in the body. I am just praying that it is nothing serious.

We are also praying that Adrian can fine a new job soon!!! Times are already hard and with him losing his job only makes things all the more harder. A good job is hard to come across these days. I just keep believing that something will come his way soon. It is hard not to stress out about it but I just am trying to stay positive!!!

I hope everyone has a WONDERFUL HOLIDAY!!!!! Enjoy the time with you family I know I will. I love Christmas because it is the time of year when people really remember what is important in there lives and that is FAMILY!!!!

Merry Christmas
Tara

A Visit With Santa

2008-12-07T17:38:00.000-08:00

Happy Holidays to everyone.It is hard to believe that Christmas will soon be here. All three of the kids had a GREAT time at the Christmas party today. The Christmas party was given by the Four Diamonds foundation and it was at the Herhsey Conventions Center and it was such a nice party.The Four Diamonds Foundation provides financially help (paying medical bills that insurance does not pay) to family's of children fighting life threatenings disease.

Well I have some bad new to share. My husband was laid off from his job on Friday. The company he worked for really depends on company's being able to get loans to have work done on new construction site and with the economy the way it is there is just no money and it is very hard for company's to get loans to have work done. We sort of thought this may happen so he had already started to look for new work but I just not so sure it will be that easy with the way things are going. Well let just say it could not have been worst timing!!!!! We will figure it all out . Like they say when one door closes another one opens RIGHT???? lol

As far as Makhi goes he seems to be doing better. He was a little sick over the weekend but I think it is because it's day 10 after chemo and that is when his counts really hit bottom. We have gotten something for Makhi to help him take off the edge of the rage he is experiencing from the steroid so that has helped. He returns to the Med Center on Dec 22 for his last chemo treatment (well let hope it is his last). We have also come down on steroid a little from .25 to .20 so that is also helping lessen the behavior problems that we are having with him.

Well I hope everyone has a wonderful holiday!!!!

Tara

Back From Disney World

2008-11-30T18:39:00.000-08:00

Hello Everyone! We have returned from Disney World last Tuesday and we had a WONDERFUL time!!! Thanks to Make A Wish and Give The Kids The World we had the vacation of a lifetime. Also Makhi got to celebrated his 4Th Birthday at Disney World!!! He got to spend his 4Th birthday at Disney World visiting all his favorite characters Mickey Minnie Tigger and Pooh. What a wonderful day that was and it was a Birthday none of us will ever forget. The girls really enjoyed there self they got to visit with Cinderella, Bella & Tinker Bell. We also got to go to Universal Studio's, Sea World, Hollywood Studios, Animal Kingdom. Let's just say it was something I denfinality could not have afforded to give to my 3 kids. We really are so thankful to Make A Wish and Give The Kids The World for the experience of a lifetime.

We returned home on Tuesday and Wensday Makhi returned to Hershey Medical Center for his 2nd round of Cytoxan(chemo). It went ok Makhi is still having a hard time sitting still that long. The older he gets the harder the time I have keeping him enterainted for the 8 hour infusions. We go back to the Med Center tomorrow for his monthly round of IVIG! That is also another 8 hour infusion that is another long day for him.

We are still really struggling with Makhi hyperactivity, and irritability levels. His behavior is still really off the charts. He is just unable to sit still for more than 2 mins without having to get up and run around. There is still alot of crying and whining which seems to be non stop! Before leaving for Disney I had talk to Makhi local Neurologist who thought maybe we should start him on Concerta to calm him down. I have chosen NOT to go ahead with that. I know for a fact allot of this behavior is steriod induced so I had ask could be come down off the steroids a little and I was advised they don't normally do that while treating a relapse of OMS. Since Makhi's 1st round of Cytoxan I have seen all of his OMS tremors stop.It's just his behavior that has been bad since we went from .17 (ACTH) back up to .25(ACTH) so we have taken him back down to .20(ACTH) and we will see how he is in 2 weeks.If his tremors are still under control we will try to get him back down to .17

I realize that Makhi will more than likely will have ADHD because most OMS children end up having it but I don't want to treat him for that until we can get him off steroids and know him true baseline.

On a good note Makhi speech is really coming along!!! He is talking so well. He was tested and he has as many words in his vocabulary as a ""normal" child his age it is just the articulation that he has problems with. He is talking in complete and full sentence.
He is also learning to count and can count the hole way to 15!!!

He also has found a new love BOOKS. Makhi always like to be read to but now he loves it. He love to have me and his teachers read to him. That is about the only time I can get him to sit still LOL.....

Well I have a long day tomorrow with Makhi so I will go for now.
I will update you soon
God Bless
Tara

Playing In The Autumn Leaves

2008-11-13T10:21:00.000-08:00

Makhi is doing well!!! 2 Weeks after Cytoxan (chemo) Makhi's behavior really became out of control but in the last week he seems to be coming back to his base line. Less rage attacks and that is a relief!!!

Makhi will be celebrating his 4th Birthday Nov 20 in Disney World in Orlando FL.
Our entire family is soooo excited about going to Disney. We will be leaving Tues Nov 18 and a Limo will be taking us to the Philadelphia airport and then we fly to Florida. We will be arriving a 3:00pm.

We will be staying at Give The Kids The World. If you want you can check it out it looks like a wonderful place and we can't wait to get away from the day to day hospital visits, doctor visits and all the long treatments. http://www.gktw.org

I will be sure to share all the picture with everyone as soon as we get back!

Makhi will be receiving his 2nd round of Cytoxan (chemo) the day after we return from Disney. If you would just keep him in your prayers and pray for him that the chemo start to resolve the OMS!!!

UPDATE YOU SOON!!!!!
Tara

2 Weeks Update After The 1st round of Cytoxan

2008-11-02T19:49:00.000-08:00

Hello All

Sorry it has taken so long for me to update everyone on Makhi. Things have just been wild around here. Let me first start by saying thank-you to everyone that has been kind enough to call and ask how Makhi has been doing.

He really has done better than I could have ever imagined. Other than vomiting once or twice the day after the Chemo he has done well. His eyes have started to turn in a little his eye doctor says this can happen after a child has chemo because it puts such strain on the body. Makhi eyes had become severely crossed due to the Opsoclonus-Myoclonus Sydrome and in January 3,2008 he had eye surgery on both eyes to correct them so I just hope that he eyes return to normal after his blood counts come back up because god knows I don't want Makhi to have eye surgery again!

Only 16 more days until we all leave to Disney Land!!!!!! WE CAN NOT WAIT!!!! My girls are so excited and Makhi gets excited about it when the girls do but I don't think he really understands all the fun he is about to have. I will take plenty of picture and put them on his website when we return.

We leave Nov 18 and return Nov 25 and Makhi will have his second round of Cytoxan Nov 26. Right in time for Thanksgiving.

Makhi returns to school this week and he is so excited! Well that is all for now!

Tara

P.S Make sure everyone Votes on Tuesday!! This is a important day and I will be working all day with the ground crews with the Get of the Vote group. I will be knocking on doors all day long. So get out and VOTE!!!!

Going for Round One of Cytoxan

2008-10-16T05:54:00.000-07:00

Hi Everyone!!! Sorry it has been awhile since I posted a update on Makhi.
Were are about to go into another phase of Makhi's OMS treatment and it is something that I wish we did not have to do. But after a lot of thought and research we have chose to go ahead with Cytoxan (Chemo) for Makhi T-Cell dis regulation after a year and a half of OMS treatment Makhi T-cells remain low 0.9 rather than 2-3. His B-Cells remain normal 1%.

By doing 3 rounds of Cytoxan we are being proactive because having the T-cell dis regulation makes him more susceptible to a OMS relapse and that is so dangerous. The relapse could bring more brain damage and also could make it much harder to get OMS into remission.

We have had to increase Makhi's ACTH from .20 to .25 just by increasing his dose of ACTH has caused his behavior to go off the charts. We have gone back to have aleast 1rage attack a day. Let me explain to you what a rage attack is to you who may not understand.I know all of you OMS parents understand but there are so many who read this blog who do not have a child with OMS. The smallest thing can set him off. If he does not get something he wants well that turns into him hitting me , pinching me, banging his head off the floor or a wall to the point that I physically have to restrain him from hurting himself me or his sisters. After he snaps out of his rage he is normal still fussy but feels sorry for what he has done and he apologizes. The hardest part of all this is knowing that once he gets to the point were he is raging you can do NOTHING until he snaps back to reality. Rage was something that at the onset of OMS he did all day everyday so dealing with just one a day is something that I can deal with. We will reattempt the ACTH wean after the 3rd round of Cytoxan.

Makhi has been heading toward a relapse since July of this year. I am scared but ready to start the next phase of his treatment. I am holding onto my faith in god that this will turn around for the better. I look at Makhi and know that I can not except anything less than that for him . He is such a fighter and always take all the treatments and procedures in stride. Every time he has a infusion he will ask me "This medicine is for my boo boo" and I look into his beautiful big brown eyes and tell him yes!!! He is getting older so he understands so much more now than he did in the beginning and the saddest part is this is normal for him. He does not remember life before OMS.

This journey that my family is on has been long!!! But together I know we will reach the finish line!!! I am just not sure how long we will be fighting to awful disease but we have each other and we still have our son Makhi and that in itself is a blessing!!!

We are starting to plan a OMS event for Aug 2009. We will be raising money for OMS research in hopes that we will someday soon fine a cure for OMS. I also would like to include raising money for children with Neuroblastoma. Neuroblastoma is the deadliest form of childhood cancer. Children are losing there battle with Neuroblastoma and it is unacceptable. We need raise money for both OMS and Neurobastoma!!!!

Makhi goes for his 1st round of Chemo on Monday!!!! I will keep everyone updated!!
Please pray for all the children who are sick. No child should have to go though such things.
Tara

Another Day Full Of Test

2008-09-25T18:29:00.000-07:00

On Wednesday Makhi had another full day of testing. He had a Bone Density test,Echocardiogram and a EKG done.... All these test have to be done because of the serious side effects that come along with using ACTH (intramuscular steroid)

All these test were painless but you have to lay still and boy was that a challenge!!!!
The good news is both the Bone Density and the Echocardiogram came back norm and we are still waiting on the results from the the EKG.

Were still waiting to see when we will be starting Cytoxan (chemo drug). I am still praying this will be the drug that helps us get Makhi's OMS into remission. After the Cytoxan is given over the coarse of 3 months then we will be able to try to scale down on the ACTH.

Makhi is still doing very well at school and his speech is becoming soooo much clearer !!!

Thank you for all you prayer!!!!

The Best Day Ever With My Daddy

2008-09-23T07:26:00.000-07:00

Makhi got to go see Thomas the Train!!!!! This day meant so MUCH to him. Makhi's LOVES Thomas the Train . His dad told me that when he saw Thomas he just shook from head to toe from excitement. He just could not believe that he was going to be able to ride Thomas. Makhi could'nt have been any happier than he was on Sunday!!! I think this was a great "" get away from the day to day struggle"" for Makhi. The only problem is now is he ask to go back everyday LOL.......

Makhi has also started school and he seems to be doing wonderful... The only thing that is still such a struggle for him is letting me leave him when I drop him off at school but once he gets pass that he seems to do fine. He is making new friends and that is a plus considering for along time he was unable to be around anyone other than his family.

Makhi will be starting a new drug called Cytoxan(chemo)at the beginning of the month to try to help regulate his T-Cell level. We unsure at this point how he will tolerate this drug but were all praying for the best and crossing our fingers that this drug will do the trick.

Makhi is a amazing little boy!!! He is a blessing and his amazing smile captures the hearts of so many people (most of all Mommy's and daddy's heart). His determination is just awesome Makhi never seems to give up no matter what obstacles are put in his way
His positive attitude toward life just inspires me to just believe it will be OK and together we will beat OMS and all the odds stacked against him.

God Bless ... Thanks for all your prayer
Tara

The Test Results Are In

2008-09-09T18:01:00.000-07:00

Makhi and I have return after a LONG 3 days. The flight was OK although I did not realize how hard it would be to keep Makhi entertained during the flights and all the lay overs..... The hardest thing would be yesterday during his visit to see Dr Pranztelli. The LP was hard on Makhi. The needle fell out of his port again which is so painful. This has been happening allot. I truly believe there is something wrong with the port. It has shifted allot since it was placed last September and it could be because he has grown so much. I will have this checked out by the Paediatric Surgeons.

Well I will give you the good news before the bad. The LP results show that Makhi's B-Cell have come back BUT only in the blood not the spinal fluid so the Rutuxins has done its job.The bad news is Makhi's T-cell levels are still way off.At this point in the game Makhi's T-Cell Levels should be back to normal or close to it but that is not the case. So now we are looking at doing 3 rounds of Cytoxan(Chemo)but before we do anything we have to wait for ALL the test results to come back. Dr Pranztelli will call me in about 2 weeks and then we will make our final decision.

Dr Pranztelli called me last night at the RMD house to share the test results with me and he believes the T-cell levels is the reason for Makhi's set backs. He feels he has regressed and so do I it is just so hard for me to except.

Yesterday when I was with Makhi in the recovery room I think I may have lost it for a min. As I sat there in that chair holding my son and listening to his cry I was just sooooo mad all I could do is cry. I just wished this would all go away!!! How much does one child have to endure? Why did this happen to my son? How long will this go on? Will he ever live the life of a normal child? Will he ever be free of all the pokes and surgeries and doctors visits after doctor visits infusions and shots?

After talking with Liz (Dr P's) nurse I felt a little better. OMS is long road and there is no quick fix and it could be along time until Makhi is completely in remission without medicine. So all we can do now is pray to God that he watches over my son and gives us all the strength, guidance and wisdom that we need to fight this uphill battle of OMS.

Makhi has IVIG all day tomorrow and then he starts school on Friday.

That is all for now...Thanks you all for checking in on Makhi. Keep him in your prayers!!!

ANOTHER PAINFUL DAY

FLYING HOME

OMS RUN

2008-08-29T07:00:00.001-07:00

Here is the link for the T-Shirt orders
PRE-ORDER SHIRTS HERE!!
http://rhythmoflife.homestead.com/TshirtOrder.html
If you aren't running or volunteering but would still like a shirt to help support the team, you can pre-order and pick your size or purchase from what we have at the Health & Fitness Expo. Shipping is available on pre-orders only.

AUGUST 31, 2008

Virginia Beach, VA

Health & Fitness Expo

August 29 & 30, 2008

To join TEAM RHYTHM OF LIFE and to raise money and awareness for the foundation call 757-544-7034 or email rolfoundation@aol.com

A Picture Of The Hole Gang

2008-08-26T21:53:00.000-07:00

Making A Sand Castle At The Beach

2008-08-26T21:00:00.000-07:00

Well we have returned from our vaction. Makhi had a wonderful time at the beach!!
He was ready to return home though after day 5 because he missed his Thomas the Train toys. For all of you who know Makhi you know how much he loves his Thomas Toys..

Now me and Makhi are preparing for our 3rd trip to Springfield IL to see Dr Pranztelli. I have alot of anxiety about this trip... Well I am always nervous about our trips to Springfield because the test (LP) holds so many answers about the future of my sons treatment and if the current treatment is working. Will his B Cell level still be alright? Have the B-Cell started to increase again? Will his T-Cell levels be better this time?. How long will he remain on ACTH? I could go on all day with all my fears and anxietys. So I will just have to try to calm myself. You would think by now I would get use to having to wait for test results but that is just something that I am not very good at.

Makhi is getting ready to start school in just 2 weeks. He will be going to school Monday Tuesday Thursday Friday from 8:30 am to 12:00 pm. He will now be mainstreemed into a regular pre-school class which I am very excited about. Last year he attended a special ed preschool for 6 months which he did wonder in but his teachers and I agree that Makhi is develpomently ready to attend school in a ""REGULAR" pre-school program. He will still be recieving speech one hour a day at school so that is the nice he won't loose that service by attending this pre-school program. The only thing I am a little disappointed about is that he will have to leave his teachers and start over with new ones. I just pray his new teacher is a patient as the ones he had at the ECC in Hershey.

That is all for now ....
Tara

A Year Ago

2008-08-15T04:32:00.000-07:00

This Picture was taken a year ago today. We were in Springfield IL for our 1st visit with Dr.Pranzetti
His eyes were cross and January of 2008 he had surgery to correct that.....

A year later a picture of him playing a Chuckie Cheese ..... He could not have done this a year ago

A Video of Makhi @ Chuckie Cheese

2008-08-14T18:14:00.000-07:00

A FUN DAY AT CHUCKIE CHEESE

2008-08-12T14:16:00.000-07:00

Yesterday Makhi had doctors appiontment w/ his oncologist. She could not believe how BIG he got. She had not seen him in 2 months because we've had to go early for IVIG and she was in clinic those days. She was able to see the tremors in Makhi's legs and is unsure as to why this would be happening and is just waiting to get the results back from our upcoming visit with Dr Pranzetti Sep 8 .

We also took the time to look back over the last year on just how far he has come. A year ago he could not talk, walk, or even stand up. A year later after he started treatment for the OMS he is able to walking talk in complete sentence, run , skip, jump.He is now up to speed with most of his peers.

Dr.Commito had seen a child with OMS back in the 80's who did not have the same outcome as Makhi has.... it just makes me relize how much modern medicine and reserch really mean.

We actually got our itinerary today and we will be flying out of HIA @ 12:30pm on 9/7 & flying into Detriot MI & then into Peoria IL. We should get there around 4:30pm. I called the car rental company today and told them I NEED a car with GPS. I just pray we don't get lost. Were 76 mile out of Springfield from Peoria IL.

Makhi had a great day with his cousin's @ Chuckie Cheese. He loves to go there it is his favriote place.His fazorite thing is to ride the horse they have there.

ONLY 6 more day until we leave for the beach. HARRRAY!!!!!!!!!!!!!!!!!!!!!!!

OH HAPPY DAYS WITH MY SISTERS ,COUSINS & AUNT MARY

2008-08-08T10:18:00.000-07:00

Makhi has shown improvement since his IVIG treatment on Wensday.. So I just thought that I would share that great news ..Now I will just cross my fingers and pray to god that thing keep going in the right direction. Aug 17 marks a year since we started Makhi's treatment for OMS. And oh what a year. He is an amazing boy his strengh and courage though all of this is just unbelieveable. He always is smiling and finding ways to make other people smile too.
I hope everyone has a wonderful weekend and enjoys the little bit of summer we have left

Splish Splash I Was Taking A Bath

2008-08-05T19:07:00.000-07:00

Things are still the same. Makhi is still showing OMS breakthough symptoms. (tremors in legs and hands) so we are going back to the Hershey Med Center tomorrow for another IVIG treatment. We were suppose to have it done Monday but the DR's want Makhi to have it done early again. So I am praying that this helps. I guess I should just be thankful it is not a full blown relapses of OMS.

Well now for some good news... Makhi has now become a MAKE A WISH KID!!!!!! He has wished to go to Disney World and his wish has been granted!!!!!! We will spend a week in Disney World for Makhi's 4 Birthday.... We leave Nov, 18 and his birthday is Nov 20 so how cool is that. All 3 of my kids are just sooo excited about going...(shhhh.. so is mommy and daddy LOL). I am sure this will be a vaction like no other.

We are also leaving for the beach in a week Aug 17 to Aug 24 (I CAN"T WAIT) . The kids start school the following day after we return home Aug 25(this is nataly b-day she will be 9). Then a week later on September 8 me and Makhi will be flying to Springfield to see Dr Prazatelli. So there really is alot coming up..... I really pray we get some answers as to why Makhi's is having OMS breakthough symptoms. I am so nervous about flying there with Makhi alone .. Just pray for me and him that we don't get lost on our way to Springfield LOL .... We have about a hour and a half drive after we land in Perio IL. My husband can not go this time because he has to take another week off in November for Disney... :(
Please keep Makhi in your prayers ...He has come so far in a year..

Enjoying Some Ice Cream

2008-07-30T05:23:00.000-07:00

Makhi is making progress.... The ACTH increase really seems to help put the tremors to rest. I still notice them when he is overheated,tired,or when he becomes upset but this has always sort of been that way. Today Makhi will complete his last day of pre-school... Yeah for Makhi!!!! He makes me so proud everyday. Just 8 months ago Makhi could only use 2 words together and now he is talking in complete sentences. It may not be very clear all the time but he is talking and I could not be happier. The last 2 months of school Makhi started to ride the school bus like a big boy and it was so hard for me to send him ... but now I realize how proud he is of himself that he did something on his own. He gets off that bus everyday and flashes his big smile at me and says "I rode the school bus by myself" He really is growing up. It is so hard to believe that he will be 4 Nov 20.

Yesterday I readed something that just broke my heart... Little Danyelle Reynolds passed away Monday at the age of 7 she was diagnosed with OMS a year ago..... After reading this I just felt so helpless..Her poor mother Janice . What do you say to a mother who just lost her precious baby girl. Please pray for this family and for strength for them as they face the unimaginable loss of there little girl Danyelle. May God be with them.....

Why Mothers Cry

"Why are you crying?" he asked his mom.
"Because I'm a mother," she told him.
"I don't understand," he said.
His mom just hugged him and said, "You never will!"
Later the little boy asked his father why Mother
seemed to cry for no reason.
"All mothers cry for no reason," was all his dad could say.
The little boy grew up and became a man, still wondering
why mothers cry. So he finally put in a call to God, and
when God got on the phone the man said,
"God, why do mothers cry so easily?"
God said, "You see son, when I made mothers they had
to be special. I made their shoulders strong enough to
carry the weight of the world, yet gently enough to give
comfort. I gave them an inner strength to endure childbirth
and the rejection that many times come from their children."
"I gave them a hardiness that allows them to keep going
when everyone else gives up, and to take care of their
families through sickness and fatigue without complaining. "
"I gave them the sensitivity to love their children under all
circumstances, even when their child has hurt them very
badly. This same sensitivity helps them to make a child's boo-boo
feel better and helps them share a teenager's anxieties and fears."
"I gave them a tear to shed. It's theirs exclusively to use whenever
it's needed. It's their only weakness. It's a tear for mankind."

...Author Unknown

UP ON ACTH

2008-07-24T13:06:00.000-07:00

Well once again I am just doing another update. Makhi has been having some OMS break though symptoms (tremors, rage attacks , mild lose of coordination). I have contacted Makhi's OMS doctor and we have decided to increase Makhi's ACTH from .17 to .20 until we go to see Dr Pranztelli on Sep 8,2008. The increase is minimal.03
I can't wait to go to the appointment and get the results back from the LP. I just pray this mild relapse is just because of a minor cold he had a few weeks ago and not because his B-Cell level our elevated.... (Crossing my fingers).

Makhi and I also went and meet his new pediatrician today and I must say I really like him. He was able to tell me Makhi's story before I ever said a word which shows me that he took the time to really go over his medical records. Makhi really seemed to like him also ,he was very playful with him.

As far as his behavior it is improving... Last week with Makhi was a LONG week... His behavior was just off the charts .. being mean to his sisters and other children he was also doing the ear piercing scream and making himself vomit when he would get himself so worked up.. well lets just say I am happy this has passed

You know one thing I must say it my girls really take this in stride... they love him so much but there are so many times OMS is just not fair to them either. It has robbed them of my time and attention alot and yet they really seem to understand. I can't say they have not become upset about it at times but they find it in there heart to atleast try to understand and that is just amazing to me.

Well I really am not excited about the incease of ACTH but it has to be done.. Agressive treatment of OMS is the only way. I'll keep everyone updated

Daddy Makhi Cierra & Nataly in a tent Makhi made...

2008-07-22T04:59:00.000-07:00

I just wanted to update everyone. Makhi tremors have gotten better since IVIG but they are still there.... just not as bad as they were. I've also notice that he trips over his feet a little more and his coordination is a little off.. so we will just have to play the WAITING GAME FOR NOW and see if this resolves itself. I really do hope we don't have to up him on the ACTH.. I am so looking forward to him coming off of it!!!!! I will keep everyone updated and thanks to everyone who has shown concern about Makhi.

Makhi Getting Another IVIG Treatment

2008-07-16T19:06:00.000-07:00

This has been a very STRESSFUL week. At the end of last week Makhi started with a cold. By Monday I could see tremors in his hands...By Tuesday they were in his legs.Also his behavior has been really bad. I have seen 3 rage attacks in the last 2 days and I have not seen that in a long time (another OMS symptom) Needless to say this makes me very NERVOUS.....

Makhi has done so well with treatment since he started.. He has had NO relapses since he started treatment in Aug of 2007. So to see his hands and legs start shaking again makes me want to cry..

I contacted Dr Pranztelli office (OMS DOC) yesterday they wanted Makhi to have his IVIG treatment early (he was suppose to have in 7/21) So we spent the hole day at the hosptial today getting it done.

OMS symptoms can reappear when a child has a cold or is sick. Having the IVIG will help him fight the cold and stop his immune system from becoming active. For all who may not understand we do NOT want Makhi's immune system to become active...So hopeful this helps him. I just PRAY that he is not headed for a relapse... He has come so far in a year. July 18 will be one year since he was DX with Neuroblastoma and OMS. What a journey this has been for Makhi and my entire family.. Please keep Makhi is your prayers

Mommy and Makhi at Mt Grenta Lake

2008-07-02T19:28:00.000-07:00

Daddy and Makhi on our fishing trip

2008-07-02T19:24:00.000-07:00

Makhi Swimming and Enjoying His Summer

2008-06-24T20:02:00.000-07:00

A letter that I wrote to my local sentor

2008-06-23T20:26:00.000-07:00

June 17, 2008
Hi My Name is Tara Woodman and I am the mother of a child who suffers from Opsoclonus-Myoclonus Syndrome and Neuroblastoma. My son Makhi was diagnosed in July of 2007 after a scary and frustrating misdiagnosis (12 weeks misdiagnosed with post viral cerebelltis) let me first give you a little insight on Makhi’s condition. Nueroblastoma is a rare form of childhood cancer only about 400 to 600 reported case in the US per year. Along with Makhi having Neuroblastoma he also suffers from a rare disorder called Opsoclonus-Myoclonus Syndrome this disease is so rare that most neurologist will never see this in their whole career. There are only around 30 to 50 cases of OMS reported each year worldwide.

Once Makhi was diagnosed with Neuroblastoma & OMS in July of 07 I was advised to apply for SSD for my son so that he would have a secondary insurance. In July of 07 when Makhi was diagnosed with NB and OMS he was on Capital Blue Cross insurance though the CHIP program. They were wonderful as far as paying bill and allowing Makhi to see whatever specialists necessary.

There is only one doctor in the U.S that specializes in OMS. Dr Michael Pranzatelli is the doctor and also the founded the National Pediatric Myoclonus Center in Springfield, Ill. It is the largest OMS treatment and research center in the world.

This is where my husband and I take our son Makhi to every 6 months for a lumbar puncture. The testing must be done on freshly acquired CSF leukocytes, so it cannot be shipped, even by courier so this is why we must travel there every 6months.

We had a appointment on March 12, 2008 that was approved by the insurance. Unfortunately I have received a bill from Memorail Hospital in Springfield for 6,546.40 and the total bill was 6,904.40 which means that MA is ONLY willing to pay 358.00 of the total bill.

Ameri Health Mercy has told me this is all PA allows for this testing
.

I NEED HELP I am not sure what to do I have spent countless hours of the phone with Ameri Health Mercy trying to get help. This visit is medically necessary and vital to my son recovery from this horrible disease. I am unable to afford to pay this bill. My son condition has kept me from being able to bring home the income I once did. I am only able to work weekend when my husband is home with my son because he is so immune suppressed. We must go back to Springfield IL in September of this year for another lumbar puncture which will be another 7,000 bill I can’t afford.

ACTH GEL MEDCINE

I am also at the mercy of Ameri Health Mercy on a monthly basis and I spend countless hours on the phone along with Makhi’s doctors also spending a lot of time tyring to get my sons ACTH Gel which is a VERY expensive steroid that is given intramuscular. It is so expensive that you can only receive this medication for 3 pharmacy in the U.S (Medmark, Bioscript, Cescor) . One vial of this medication is $27,000 for a (5ml) vial. Questcor is the ONLY maker of this drug.
(www. questcor. com).

Because they are the only makers of ACTH Gel Questcor can decided what price they would like to make this medication
When my son was first diagnosed with OMS the price was 5,000 a vial and in April of 2008 the price went up to 27,000 a vial. I struggle monthly getting Ameri Health Mercy to pay for this medication. What I only wish I could get Ameri Health Mercy to understand is this med is not something that I can go down to street and buy nor can I go to my local hospital and get this med . My son could have a full blown relapse without this medicine which will cost them so much more in the long run. My son uses 1 vial a month (5ml) .17 every other day= $27,000. If he should relapses he then would be put on .55 ml twice a day for two weeks and then .55 every other day which = 3 vials $81,000 a month. I think it would be in there best interest to pay the $27,000 a vial a month and hope that we can get Makhi off this medicine in the next year. Last month we missed a dose because the insurance company and the pharmacy could not figure out what they were doing.

This is just my personal thought on this issue most child who have Opsoclonus-Myoclonus Syndrome are on some sort of a MA government program because it is consider being a disability why didn’t the government buy the rights to the medication before the FDA approved the medicine.

Now my son’s health is in the hands of the insurance company and an overpriced pharmaceutical company who really don’t care. This is a form of highway robbery and unfortunately there not much I can do about this but one thing I do know is my son health hangs in the balance between my insurance company and Questcor and that is a crime in itself.

All help would be kindly appreciated
A Mother of a child with NB and OMS
Tara Woodman
e-mail tarawoodman@comcast.net
Come and meet Makhi at his webpage there is a video of him on there if you scroll to the bottom of the page you will see it this will just give you a idea of what this boy has been though. www.makhiwoodman@blogspot.com
You can visit www. omsusa. org to learn more about OMS

Mother Follows Instincts

2008-03-26T18:48:00.000-07:00

Mother Follows Instincts

2008-03-26T18:44:00.000-07:00

Mother follows instincts to treatment for childBy Press And Journal Staff : 9/5/2007
It may have been “mothers’ intuition” or her experience as a medical worker, but Tara Woodman did her homework and took an active role in assuring that her son Makhi received the best possible attention to his mysterious condition. Makhi was diagnosed with a rare disorder called opsoclonus-myoclonus syndrome (OMS) in July, after a scary and frustrating misdiagnosis. Following a viral infection two months earlier, the two-and-a-half-year-old’s condition didn’t improve according to their neurologist’s prognosis. “I think it was my mothers’ instinct,” said Woodman. “I did what I had to do.” Makhi’s story began the last week in April, just after Tara, a nursing assistant, and Adrian, an electrician, bought a home in Middletown. That week, Makhi had been hospitalized for three days with severe diarrhea from a Rotavirus infection. In the week after his release, he became clumsy and his hands shook and by May 2 he had to be rushed to his pediatrician’s office with uncontrollable shaking and eye rolling. Makhi was first diagnosed with post-viral cerebellitis; a sudden onset of uncoordinated muscle movement following a viral infection. The condition usually resolves itself in four to six weeks. The Woodmans were referred to a neurologist who confirmed the pediatrician’s diagnosis. But on the way home that day, Makhi began vomiting and was back in the hospital for two more weeks. Following his release, Makhi was not improving even after five weeks. He still couldn’t walk and shook when he even tried. Doctors extended his estimated recovery time from four to six weeks; Tara was told recovery would take to six to nine months.“My gut told me there was something else wrong with our son,”she said. “I didn’t know what, but I knew that it was more than post-viral cerebellitis.”So Tara sought a second opinion on July 12. The two common tests for neuroblastoma – a tumorous cancer of the nervous system – had come back negative months ago. But this time an MRI was ordered and a tumor was located on Makhi’s spine. It was surgically removed on July 23, but significant problems with his nervous system continued. Tara immediately started researching OMS via the Internet. One Sunday night, she located the world’s only expert on the disease in Springfield, Ill., and on Monday morning called and made an appointment. She then spent two days trying to get her insurance company to cover the visit. “They did, on Tuesday evening, so my husband and I packed the car and headed to Springfield to meet Dr. Pranzatelli Thursday morning,” said Tara.Last week Makhi started chemotherapy. Makhi’s prognosis is good but his mother said, “He still needs a lot more time and attention than the average toddler.” Just keeping up with the demands of medical appointments for lab work, check-ups, and physical, occupational and speech therapy has kept both Mom and Grandma away from their jobs for more than a month. Tara’s mother, Brenda Spigelmeyer, has been away from her home in Galeton, Pa., living with the Woodmans, lending a hand with cooking, cleaning, laundry, and driving kids to appointments and activities. “We were always a very active family: playing soccer, going to playgrounds and swimming” said Tara.Makhi’s outcome is likely to be better because Tara saved precious time in the diagnosis and treatment process. She did so by taking the initiative to get a second opinion and seek out information on her own. Tara advises parents faced with similar medical decisions, “Don’t ever ignore that [gut] feeling.”What is OMS?The number of known OMS cases worldwide is uncertain but it is estimated between 100 and 150. There is only one physician, Michael Pranzatelli, who is considered an OMS expert. Consequently, it is common for OMS to be misdiagnosed initially. This was the case when Makhi first exhibited the telltale “dancing-eyes-dancing-feet” symptoms on May 2. OMS can sometimes be a symptom of neuroblastoma; a tumorous cancer of the nerve network that carries messages to the brain.Opsoclonus-myoclonus literally means “dancing eyes-dancing feet.” The uncontrolled eye and limb movements are a result of an attack on the nervous system. Often present at birth, the sudden growth of the neuroblastoma frequently follows a viral infection like the flu. The immune system attacks the tumor, but because it is a growth of the nervous system, it resembles brain cells. Consequently, the brain comes under attack also, resulting in loss of muscle control.The Local OMS ConnectionA graduate of the Penn State Milton S. Hershey Medical Center College of Medicine, Pranzatelli founded the National Pediatric Myoclonus Center in Springfield, Ill. It is the largest OMS treatment and research center in the world. Seventy-five percent of its research funds come from grants, for which Pranzatelli does all the grant writing. Because OMS is classified as a rare disease, it is less likely that federal, state, or corporate agencies will prioritize funds for research. But Pranzatelli argues that funding research for rare diseases has often led to innovative treatment for more common but related diseases. OMS is an autoimmune syndrome similar to more common diseases such as lupus and Multiple Sclerosis (MS).For more information on OMS, visit http://www.omsusa.org.

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