Going for Round One of Cytoxan

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