Rituximab tomorrow

Hey Sharmin didi and lil A!
   

soo happy for u
best of luck for future
xxx
Pareeshay

Thank you so much Pareeshay 

Sharmin

Hi Sharmin,

You have every reason to be happy. Your son is a great sport. We wish him continued success in his life.

Sharmin, i am really so happy and very proud of you and of my sweetie little A, can not imagine how these wonderful news give us all a lot of assurance and support, keep it up. Both of you are an inspiration

Love you so much
manal

 

Thank you Canadian Family and Manal, 
Your encouragement means everything to us 

I hope that Ahmad and Lil Miss A are doing great!

Sharmin

We are waiting for the ritux to take effect.  Lil A received 20cc/kg of blood 1 week ago and today (just one week later) his hg was 104.  The antibodies are present - but ritux prevents production of new antibodies (does not effect those present) - and the existing antibodies exist for several weeks.  I hope that the latest ritux treatment is able to block the production of antibodies - and that the existing ones disappear soon.  He is doing well, he is not affected by this. Your prayers will be needed. 

Sharmin

A Messaage for Little-A ,

Little-A, You're  always in my prayers...

Best Regards
Take Care
Umair

You and little A are in my prayers, please be strong. when should you test his HB again How long it takes the rituxmab to take its effect Sharmin, did the doctors of Oakland comment on that??

manal

Sharmin,

Please be strong,Little A is always in our prayers,i hope this round of ritux will take care of these antibodies, .Wasn't Lil A doing much better then that,now suddenly this huge drop in hb

Thank you Umair, Manal, and Zaini,

The existing autoantibodies can be around for a while (even 2 months).  I am hoping that they decrease quickly and the rituxan prevents the formation of more antibodies.  I wonder if we will need to give him the full course of rituxan or try something harsher (I am afraid to do so because it can be dangerous).  I am praying that this will work.  Feeling a little lost right now.  He is getting a blood test and cross match today and transfusion tomorrow - thank god he will be able to get his tx tomorrow because I was afraid that the hospital was not going to be able to fit him in.

Thanks again friends - your prayers and support are everything.

Sharmin 

Be Strong Sharmin,i know its easier said then done,but we all are praying for you,i hope a reasonable solution comes out soon,wishing you luck and sending prayers your way.

Zaini.

Thanks Zaini, I don't know what I would do without you 

His hg today was 109 - go figure?  Still not good for 1 week but better than 104.  I hope that this next tx lasts a lot longer. 

Sharmin

  I hope that this next tx lasts a lot longer. 

I hope so too  .I hope there will be a cure available soon  Solution of all the problems.

Zaini.

Sharmin, any update?

manal

Lil A is going in for a transfusion today.  His hg was a little higher than we originally thought - but still too low this soon after his last tx.  When they do the crossmatch they also look at the antibodies, at that time we will know if the titers are high right now.  Because he has had ritux, more antibody should not be produced so these titers should decrease and diminish over the next month.  He is looking a little bit more coppery than he was a few months ago, I hope that his iron levels have not risen.  We are working hard at chelating him.  I wonder if Oakland would be willing to increase his exjade dose - as I certainly don't want to increase his desferal. 

Sharmin