Discussion Forums > General Chatter

Have a Great Trip, Sharmin!

<< < (8/9) > >>

Manal:
Please Sharmin, be patient as much as you can. Hope this change would only last for a short time.

take care

manal

nice friend:
Hi sharmin :
it could be possible that u agree himm to come for online voice session so one of us ( best one ) try encourage him and able say  that its a short time period so be humble and calm in it .... mayb he understand wat he didn't understand to you .... its only a sugesstion .. mayb it works .. if some one of us  ask him wat he want to do and wat is his probleme.. bcoze if he is tired to going here n there . .. and tired to changing docotr so he will b also angry to you .. in this case some one else ( third person can talk to him as their friend ) so he will able to share their probleme which he can't share to you ... in thal child they also care for their parents .. and sometimes dont want see them tensed .. in the meantime they look's for good care of their own self .... iin these two different thinking they gone confused abt wat to do .. in this kind of situation they could be angry and rude sometime over their bros n sisters .... ( a knid of chir-chara-pan )  ,.... i think u r the best mom ... you encouraged your son to win some medal a few weeks ago ... i didn't forgot that.... u can do it sis ... be strong and brave as you ever been .. i want to see you again in that form ..... dont worry  everything will b fine n set.... i want to hear that to you   SUB SET HAI :thumbup  as soon as possible .. BEST OF LUCK 

sub set hai = everthing is okiey :thumbup

Sharmin:
Thank you everyone,

We have been trying our best to normalize things for the kids.  We try to add something fun into everything - today after transfusion we took the kids to watch a movie (space chimps - they liked it:).  We are still having some rough patches with both of them.  I think our daughter, regardless of how much we try to balance everything and attend to her, is getting a little irritable as well.  We are at the hospital once or twice a week for the next few weeks - also we are returning to Oakland next week so it will be at least a few weeks before we can slow things down a little. 

Andy, as you said, there may be some effect from the meds and some from the experience. We have been very open to his questions, I hope we get through this soon.  He has asked many questions lately, including questions about thalassemia and life span.  He was wondering why people are often 'surprised' to know that 50 year old thal majors are alive, he asked if this was surprising because they were not expected to live so long.   I  assured him that with proper care and compliance there is no reason for thal patients to have a shorter life span.  It has been difficult always finding the right words, he is seeking comfort and understanding at times and other times he is irritated if I ask whether he is still having head aches or nausea (most of these symptoms have settled).    I think despite our own fatigue and concern (from sleeping in a hospital cot for days etc etc) we have to be patient for him.  We need to stay positive and strong - in the long run I hope that this will all be for the best. 

I can not explain how it felt when -  before beginning this treatment - he woke up one morning healthy and happy - all ready to visit grandma and his little cousin.  He put on his new Disneyland shirt and hat to show off to everyone - instead the hospital called to begin his IVIG - and he lay in the hospital bed sicker than I have ever seen him - fever, chills and vomiting for the next week - wearing his new shirt and his hat by his bedside.  I realized that being a parent takes more strength and skill than anything else. 

Thanks to your prayers, he is much better now - since then his treatments have been going well - he will have his 2nd ritux this Friday.  I hope for the best.  Thank you all again for your very helpful advice - I will read it over again carefully.  I'm sure he would be very happy to get advice from all of you once he is ready - many of you understand his situation better than I do. 

Love,
Sharmin

Sharmin:
We will be going in for our second Rituximab treatment tomorrow morning.  I hope everything goes well.  Today was the first day he ate well and was in a good mood.  Thanks for your prayers friends  :hugfriend  I wish you all the best.

Sharmin

Zaini:
Wishing you all the luck Sharmin  :hugfriend.

ZAINI.

Navigation

[0] Message Index

[#] Next page

[*] Previous page