Mystery Diagnosis On Discovery Health Channel Show on OMS

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

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...

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

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......????

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

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

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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.

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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.

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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.

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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.

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(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.)

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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

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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

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