Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Madhavi on October 09, 2009, 11:21:12 AM



Title: Mohanish and his transplant
Post by: Madhavi on October 09, 2009, 11:21:12 AM
Today we have admitted Mohanish to the hospital. Today he was in the general pediatrics ward due to inavailability of the beds in the BMT ward. Tomorrow morning he will be given a central line and shifted to that ward...
As of today he has had some infusion and blood tests and has had a 'XXX' hair cut...i.e. he has been shaved bald... :wink
He is a little uncomfortable at having restrictions due to the hospital set up but is coping ok with it. My husband Manoj is with him there. Mohanish hates the time when I tell him that I have to return home but I hopefully convince him enough!
We have my mom here to help with Masumi my daughter at home....
Nothing much to report today, but will try to keep you all posted about the happenings daily if you all do please...intended to write a lot and sort of maintain a diary in detail but it is really late in the night (read 12.20)and I have to be up by 5 tomorrow...so maybe better write ups when I have time....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on October 09, 2009, 11:28:10 AM
Dear Madhavi,

I wish you the best from the bottom of my heart!

Please keep us posted!

Good luck with everything,

Lena


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 09, 2009, 07:19:24 PM
Madhavi,

Wishing Mohanish and you the best of everything.  Please keep us posted, our thoughts and best wishes are with you at all times. 

hugs to Mohanish,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Manal on October 09, 2009, 08:47:31 PM
Madhavi, :hugfriend

My heart is with you and Mo is in my prayers. I know this is a hard time but i am sure that you are strong and that soon you will celebrate his cure. Wish you all the best in every step and will be waitng for your update. Take care please :hugfriend :hugfriend :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 10, 2009, 12:53:07 AM
Thank you for your wishes dear friends....
Today is day 2 and the day began with the insertion of the central line...to see Mohanish go through it was something beyond words and hear him talk in his sedation is something best not described! But he recovered through it all after he was admitted into the special ward. Right now, he is not in isolation and shares the room with a little girl....He looked much better in the afternoon after I saw him through the glass and spoke to him over the intercom. Probably the fright of going through the procedure and the medication given alongwith had made him a little groggy... But I guess that was something unavoidable...and he has overcome it...
He has some of his toys to keep him company alongwith his dad :biggrin and also a television set(albeit playing Chinese channels! :rolleyes)He can eat home made food provided it is in microwavable boxes. So as of now I have the great duty of being the literal food provider!
It was a little tough at the start of the day today, but now am much better thanks to many but mostly Mohanish himself and his face and comfort! Somehow on my way home from the hospital I am always thinking about you all and sharing my day with you all :hugfriend
Will try to keep you all updated and hope that what I write does not bore you all...
Thanks for your love...it makes a world of difference....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on October 10, 2009, 01:14:09 AM
Madhavi,

I think all of us are interested in your reports: the steps and the feelings you are going through and keep our fingers crossed that everything will turn out well. Time to be optimistic now and why not?

Our thoughts are with you,

Lena.


Title: Re: Mohanish and his transplant
Post by: jade on October 10, 2009, 02:27:15 AM
Hi Madhavi

We are all with you in our heart though we cannot be there in person.  We wish you and Mohanish the best.  Keep us informed whenever it is possible for you to do so.

Take care
Jade


Title: Re: Mohanish and his transplant
Post by: Manal on October 10, 2009, 06:29:27 AM
Quote
and hope that what I write does not bore you all...

Madhavi, we are all egarly waiting for your update, i am praying for you all. He is a strong boy :biggrin and he will be just fine

manal


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 10, 2009, 09:56:16 AM
Madhavi,

We all look forward to hearing your updates as our thoughts are also with Mohanish at this time.  It sounds like a lot happened today.  Each step seems to be preparing you for the next.  I hope that Mohanish comes though this with flying colors - smiling for his mama. 

Take good care,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 10, 2009, 11:08:50 PM
Day 3...reminds me of the time I had my exams during school and college days...the toughest part was to wait for them to begin...and then gladly the days just flew...!
He is in much better spirits than the time the central line was put yesterday...it almost seems like a distant memory already...he is doing quite well...and seeing him like that is really a good thing!
He has people calling him and speaking to him as also people meeting him...yesterday 3 of our friends met him and probably that helps us all cope too...And of course to add to it all he has all your wishes from the world over...
He is telling all that he is going to be stronger than us all and then save us from the 'bad men'!And after having Spiderman,Batman and even Scream masks at home, the new 'XXX' boy wants me to buy him the XXX mask!
And seeing the other parents who visit their kids in the other beds in that ward and interacting them helps me learn more about their experiences and it reminds me of you all all the more...that one seems like a BMT thalpal! :rotfl
Nothing much to report today...in case there is I will try to write in after I come back from the hospital at night...
Will not thank you all for your love and support again and again...how much can one hammer in a nail of gratitude anyways :rolleyes....
Love to all....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on October 11, 2009, 02:18:54 AM
Madhavi,

I am so mad at myself i missed this post,my prayers are always with Mo and you,please keep updating us,i don't know if anyone has done that before,i mean posting through out the BMT,it will be a good thing for you to keep sharing and getting it off your chest and it will be good thing for us as we will know what exactly is going on and will be able to keep praying.

Please keep posting :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: souly on October 11, 2009, 05:09:49 AM
Madhavi,
My prayer with you and your family. Please keep us posted.

Souly


Title: Re: Mohanish and his transplant
Post by: Zaini on October 12, 2009, 01:35:43 AM
Hoping everything is ok :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 12, 2009, 03:38:58 AM
Day 4:
Nothing significant has happened since I wrote in yesterday...Mohanish is doing pretty well and his high spirits really make me drunk in courage and love :biggrin
Today I just got to know that maybe we may have to spend more than we anticipated and more than what Manoj had arranged for before he went in with Mohanish...so spent the time till now(its 4.30pm) brooding and getting that into place.Fortunately we have a couple of very good friends who are going to help in in case of emergency and then we can pay them back later when Manoj can get the blocked money 'freed'!
In case there is any other change I will write in at night....will leave with their dinner in some time...
...yeah I got some instructions from the staff there today regarding the food...what was funny was that they thought we Indians eat curry all the time! It is called 'gali' here in Chinese and they told me not to give him that...I tried to get them to understand our diet and it was interesting! :rotfl..Actually it started in the morning when I was instructing the nurse in there about the way to serve them oats and cornflakes!
But I managed to convince them that I am giving him a balanced diet without too much of spices and salt....
Thats that for now.....
Love,
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on October 12, 2009, 11:33:49 PM
Its good to hear that everything is going well till now,hopefully this trend will continue in the futire too :hugfriend please keep updating.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Dori on October 13, 2009, 03:49:14 AM
Hey,

I haven't forgotten about your family. I noted it all in my agenda.

My love to you all,

Dore


Title: Re: Mohanish and his transplant
Post by: Prets on October 13, 2009, 07:10:38 AM
Dear Madhavi,

My Prayers and Love with you Always, Keep us posted.

:-)


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 13, 2009, 09:21:12 AM
Day 5-
Again nothing out of the ordinary(ordinary as in the routine that has been somewhat established in these past few days!)
Mohanish cried a little when the dressing was done for the central line, but was again his usual bright/talkative self when I met him in the evening...
The highlight of the day was that I was surprised to know that his sister Masumi can come and see him...so surprised him with that and his reaction was what made our day today!
Sometimes Mohanish does ask how long it will take for him to be cured/treated...but other than that no special complaints or cribbing from him...
Thats all for today...
I await returning home to your replies, wishes and love...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 13, 2009, 09:39:45 AM
Madhavi,

Quote
The highlight of the day was that I was surprised to know that his sister Masumi can come and see him...so surprised him with that and his reaction was what made our day today!

how cute:)

He sounds like such a wonderful little boy.  Sending more wishes and prayers your way  :hugfriend :hugfriend

Sharmin


Title: Re: Mohanish and his transplant
Post by: Lena on October 13, 2009, 12:43:16 PM

Madhavi,

You are now on Day 5. Have you been informed of the exact BMT date or of the steps prior to it?

Lena.


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 14, 2009, 01:00:34 AM
Day 6-
Got some sort of idea about the schedule to be followed for the BMT today...
Right now Mohanish is being administered antiviral treatment to prevent the onset of infections including those of the site of the central intravenous line. This therapy will be given for a total of 10 days.After that he will be transferred to the isolation BMT ward/room where he will be administered intravenous chemotherapy for 10 days. About 4 days after the initiation of that Masumi will have to be admitted to the hospital for a total duration of 8 days. The BMT will be on the 11th day after the chemotherapy is initiated.
So as of now, the tentative dates are -18-19th Oct:Mohanish is in the special isolation room for initiation of chemo.23rd-24th Oct:Masumi is admitted. 29th-30th Oct:BMT.
The doctor also said that so far Mohanish's condition and status in the ward is good.
Havent met him yet, will do so in the evening and write in if there is anything new...
Thanks for the compliment Sharmin and I hope I have answered your query Lena...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on October 14, 2009, 01:13:17 AM
Thank you Madhavi,

now we are anxious too as days go by!
Hope for the best,

Lena.


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on October 14, 2009, 01:09:27 PM
Best of luck to all of you.

We really hope Mohanish is cured and be with the family soon. Please keep posting.


Title: Re: Mohanish and his transplant
Post by: Dori on October 16, 2009, 01:11:41 PM
:)

I'm a little tired but wanted to post that you are in my thoughts.

Love as always,

Dore


Title: Re: Mohanish and his transplant
Post by: Manal on October 16, 2009, 01:18:08 PM
Madhavi, hope everything is going well my friend

manal


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 16, 2009, 01:34:49 PM
Thinking of you Madhavi, praying that our little guy is cured soon and that the procedure goes very smoothly for him.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 17, 2009, 12:43:08 AM
Day 7/8/9-
What has been new in these days is that Mohanish has now been transferred from the previous bed no 10 to no 9 which is the isolation room since last evening. He was a little stirred from his newly found complacence in that room for a while but is doing much better than what I had anticipated... The good thing is that he has an individual tv so can have his choice of english programmes when it is on!
His room now has 2 parts, Mohanish has his bed, the tv with remote now!, a side table and his monitors.The bed is on one side of a partition with a window.There is no door but Manoj should avoid coming into Mohanish's side as much as possible.He has his chair cum bed on the other side of the room. It will take a while to get them both accustomed to this new arrangement, but it is not as bad as it seemed! Mohanish is being quite good despite all the changes and everything. Of course we have to forgive him the mood issues on and off because thats the only outlet for his fears/frustrations...and the tantrum if I can call it, lasts only for a few minutes!
The date of transplant is 29th. The chemotherapy will be started on the 19th. Masumi will be admitted on the 23rd...so after that I will not be able to mail you all...She should be discharged on the 30th or the 1st after which I will be able to tell you about the happenings...
The money issue is also settled and the doctor has confirmed that the amount of money we have arranged for is enough! :biggrin
Today being saturday, we will have many visitors to see Mohanish and it will be like a fair!
Somewhere I think that all the prayers and love are helping us all deal with this better...without you all it would definitely not have been this easy!
Will write in when there is something more to report....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 17, 2009, 12:47:03 AM
Thank you for the update Madhavi, sending lots of luck and warm wishes,

Sharmin


Title: Re: Mohanish and his transplant
Post by: erum minhas on October 17, 2009, 01:13:45 AM
best of luck for bmt.its very difficult for parents


Title: Re: Mohanish and his transplant
Post by: Manal on October 17, 2009, 02:02:50 AM
He is really a cute boy.

Thanks dear for the update. Sending you non- stop prayers

manal


Title: Re: Mohanish and his transplant
Post by: Lena on October 17, 2009, 02:23:42 AM

Little Mohanish and you all are in our thoughts, Madhavi.

May you be strong and successful in your endeavour,,

Lena.


Title: Re: Mohanish and his transplant
Post by: nice friend on October 17, 2009, 09:13:12 AM
Hi Madhavi,
Seding lots of prayers, good wishes and Regards your n Mo's way . .... ALL THE BEST  ...


Umair


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 18, 2009, 04:30:24 AM
Day 10-
Mo is doing much better with adjusting to his room....met him in the morning today and he is well...
Was just reading through all the posts here so far....have tears in my eyes...have no other option but to be thankful to have you all...
Nothing much to report as of now.....
Love,
Madhavi


Title: Re: Mohanish and his transplant
Post by: Prets on October 18, 2009, 07:41:38 AM

Not having much to report also means that everything is going well for little Mo. :-)

Keep the faith Madhavi, my prayers and love with you and your family.



Title: Re: Mohanish and his transplant
Post by: Zaini on October 18, 2009, 08:29:56 AM
Wishing you all the luck :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Dori on October 18, 2009, 08:59:13 AM
Si, I am with Zaini.

 :hugfriend


Title: Re: Mohanish and his transplant
Post by: nice friend on October 18, 2009, 01:18:30 PM
always praying for you lil-Mo .... sending lots of prayers and regards your way ....

Best Regards
Umair


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 18, 2009, 01:36:11 PM
Mohanish,

Hey little trooper, sending you lots of strength, love and prayers.  Take good care of yourself and you mommy - she loves you very much.  Get all better and then give her a big hug and millions of reasons to smile!

Love,

Auntie Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 19, 2009, 11:28:31 PM
Day 11 and 12-
Mo's chemotherapy has begun. It is a little tough now,wont deny it!  :rolleyes
He has monitoring electrodes attached to his chest and his right index finger(bless the right handed boy! :rotfl)...And since the drugs that have to be given on these first 2 days affect the heart, there is a periodic ECG to be taken as well...but I was present during on the of those ECG sessions and it wasnt as ghastly as the first time we had got it done for Mo during the complete body check up! Ghastly for Mo as well as the attending doctor!!  :rotfl :rotfl
He has to gargle with some special liquid every 4 hours and that is a little irksome but as many other things no other go!
There are a total of 4 chemotherapy drugs that will be used and they will be given one in a day over a period of 10 days in varying schedules, which I am not completely aware of. But these have the potential to decrease his appetite and lead to nausea and vomitting...So far I am trying to make the food that he likes so he atleast consumes something...They are also supplementing him with lots of electrolyte  fluids which include salts like KCl,NaHCO3... Due to the language hassle, it is a little difficult to get exact details...
Another thing, what I have got to know is that the doctor is planning to do a sort of triple transplant procedure...by that I mean-Cord blood transplant with bone marrow transplant and peripheral blood transplant. That is why Masumi needs to be admitted 6 days in advance to undergo what is called as pheresis. She has to donate about 50% of her blood volume to her brother in small quantities in these days. Her blood will be withdrawn in amounts of 50-100ml at each go and she will be transfused blood to refurbish that. This will be done over a period of those 6 days before the transplant.
Thats all for now...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Manal on October 20, 2009, 07:14:37 AM
Madhavi, i am praying ofr both of your children

manal


Title: Re: Mohanish and his transplant
Post by: Dori on October 20, 2009, 09:00:24 AM
I never heard about that triple thing before. It's very interesting. Take good care of everyone, including yourself.
 :hugfriend


Title: Re: Mohanish and his transplant
Post by: Bostonian_04 on October 20, 2009, 03:03:45 PM
I just read about this topic.

Madhavi,  my prayers are with you and your children. Hope everything goes well and Mo is cured for ever.

Thank you for sharing your day-to-day experience with us during this time. This will help to prepare other parents who are thinking of BMT for their child.


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 20, 2009, 09:37:16 PM
Day 13-
Mohanish is doing quite well and after that change with the chemotherapy he is again himself. He loves to have visitors so that he can exhaust his talks which he probably saves the whole day long. He is watching television and now also has his pen and scribble pad to doodle on! Infact like I already said seeing him doing well gives me strength.
Yesterday another of our Chinese neighbours who is more like Mos aunty/friend came to know about Mohanish and was in tears.She visited him and offered all the help that we needed...it is so surprising to find such good friends in a foreign land where even communication is a little difficult! She visited Mohanish and made his day...a nice surprise for him...I said that the best help she could give us is to visit him whenever she has time because he really loves having visitors!
About writing it all here...well it helps me as well because it is more like I play reporter and it makes it easy to be living it all in real!
Thanks again for all your prayers and good wishes...
Madhavi


Title: Re: Mohanish and his transplant
Post by: maha on October 20, 2009, 11:08:40 PM
Hi Madhavi
I have followed this thread from day-1 although this is the first time I am writing my best wishes. All these days Mohanish was in my thoughts and prayers but since yesterday Masumi has dominated it. May things go easily with her as well. Difficult days lies ahead, may you all come through it cheering and celebrating.

take care
maha


Title: Re: Mohanish and his transplant
Post by: Zaini on October 21, 2009, 12:51:09 AM
Quote
because he really loves having visitors!   

I wish i can be a visitor too :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: nice friend on October 21, 2009, 07:08:29 AM
GOD bless u Mo , May God bless u with healthy n joyful long life , may God bless u with supe health ...


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 21, 2009, 10:16:35 AM
...I wish I could explain to Mohanish about all the visitors here! Thank you all friends...
...Reading your posts is so moving...wish there was any other way of saying it-THANK YOU!
I had heard about people meeting angels but never did encounter any so far...it has just begun by meeting them all online!Your presence in our lives is so important because it is in our hearts! Waiting to meet you all in person some day...


Title: Re: Mohanish and his transplant
Post by: Lena on October 21, 2009, 11:05:23 AM

 What kind words, Madhavi! Thank you on behalf of everyone here...
 Wish everything turns out well for your little angel.

 Lena.


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 21, 2009, 11:28:57 AM
Madhavi,

Thinking of you and your little angels.  Looking forward to the day that our little Mohanish comes home - cured and healthy  :hugfriend :hugfriend 

Love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Manal on October 21, 2009, 03:12:33 PM
Madhavi, that is for little Mo, i know he loves spiderman :wink
manal
(http://www.balloonplanet.com/shop/images/products/product_7383_large.jpg)


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 22, 2009, 12:15:32 AM
Day 14-
The chemotherapy drugs that are administered can cause stomatitis i.e ulcers in the mouth and hence Mo needs to gargle every 2 hours. That is being a little bit of a discomfort. He is a little crankier than before now but is happy once we spend some time with him and indulge him in long conversations.Probably the only means of letting out his energy is being a little adamant and cranky! Yesterday was a little rough because Manoj also was a bit shaken on the patience level, but both are back to being as close to normal today.And having my mom here helps especially at such times because she gives us all strength and support and assurance...It really helps to have a parent with you when you seem to forget that you are the parent as well and have to be strong! :rotfl
I spoke to the doctor about Masumi's admission as well. It seems that she needs to have infusions over a duration of 6 hours or so and later can return home...it is like an oasis in the desert to hear that because she will be happier to be free at home even if for the evening and night. So most likely we can return home each night except 28th,29th and maybe 30th if needed. We need to go back to the hospital by 7.30 each morning to have her blood tests,injections and the infusions/transfusions. 24th at 10 am will be Masumis admission and then later will know what and how they plan the injections and infusions.
Also today I have to get about 10 people with B positive blood type listed in case there may be a shortage at the hospital blood bank. This is because Mohanish may need to be administered platelets after the transplant...I have already got 4 names ready including myself and the search is on...Most likely though these should suffice as B positive is a common group in China too.
Lena...those words were really heartfelt and I mean it ... these times are tough but having such a huge support system makes it easier to tide over. As I said my mom here, my father and brother back home in India who call daily, our friends here in China, our neighbours who are more like extended family and you all...You know when I am taking Mohanish's food to the hospital, somewhere in the crowds of the strangers I crave to see some familiar face...crave for a tight friendly hug-just to have that extra bit of security and comfort...I long to see one of you all there popping out from the computer and literally coming into our lives...
Thanks Manal...that is so thoughtful of you...
Sharmin...thanks a ton dear...words full of love and care are like a soothing balm that help heal well....
Umair, Zaini- shukriya doston... pyar itna diya hai tumne ki ansuon ke elava aur koi zariya nahi, alfaz nahi mere dil ki baatein bayaan karne ke liye...
If words were flowers, I would offer you the most colourful and beautiful bouquet for sending me your love and wishes and helping me so...-Jade,Souly,Dore,Preety,Canadian_Family,erum minhas,Bostonian_04,maha.... Sorry if I have forgotten anyone in the list...but I am really thankful to the heavens for having sent the all of you to shower us with His love and divinity!
Madhavi


Title: Re: Mohanish and his transplant
Post by: Dori on October 22, 2009, 10:14:38 AM
:)

How old is Mohanish? Does Mohanish something, and so what and in which languague?

 :hugfriend


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 22, 2009, 07:15:12 PM
Dore...Mohanish is almost 4 now...but not yet reading....but I am sure he is better than me at reading hearts and love!I guess you were asking about his reading,right?


Title: Re: Mohanish and his transplant
Post by: Dori on October 23, 2009, 04:36:46 PM
Sorry for my mistake! Im a lil ill - we blame it onto antibiotics. I tried to say of his name means something and in which language?

Sweet dreams, Dore


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 24, 2009, 01:08:22 AM
Day 15/16-
Nothing new...the gargling continues 4 times a day for 2 hours.....The chemo medicines keep on changing as per the schedule planned but like I told you before, I am not really aware of the exact medicines being used.
We had taken Masumi to the hospital today, but only the paperwork for the admission was done and we report again tomorrow morning at 6.30am for blood tests and some infusions. I am not sure if they will do the pheresis...But we can come home whenever it is done with which could be as early as 2 hours or upto 6 hours.
Mohanish is doing fine... and is a little worried that his sister may also probably have to get a central line put during hospitalisation...but I have tried to assure him about that!
Dore-I forgive you but probably not your antibiotics for troubling you so! :mad
Mohanish is one of the many names of one of our 'naughty' and 'flirtatious' Gods Krishna. And maybe Mohanish will also grow up to be as popular with the girls!lol! It is a very Indian and Hindu name so to say.... On the other hand, Masumi is an Indian and also a Japanese name(no wonder easier to pronounce for the Chinese here!lol)Her name means innocence and purity!
Will try to write in daily till the 28th,29th and 30th....
Take care everyone....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Prets on October 24, 2009, 06:05:58 AM

We are with you Madhavi,  :hugfriend

Hope all goes well with Mohanish and Masumi. Keep us posted.

 :heartpink   :heartpink

(One for each little M)

 :smiley


Title: Re: Mohanish and his transplant
Post by: Dori on October 25, 2009, 09:22:15 AM
Nice names. I hope you're having a beautiful Sunday.  :hugfriend
p.s. I vaguely have heard about Krishna. Im a laywoman in such things. I've no idea.


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 25, 2009, 09:36:49 PM
Day 17/18-
We have been taking Masumi to the hospital in the morning to be injected subcutaneously and then we bring her home. She has also  had the routine blood/stool/urine tests. Most likely the iv injectables will be administered on the 28th when she will be in the hospital all night.
About Mohanish, he is doing well so far. The chemotherapy medicines have varied side effects but so far he had fever only once the day before and it was controlled with Ibuprofen. Now he is on ATG, the last drug in the list, for the days till the transplant. He received a transfusion the day before(100ml) this time.His Hb was 8. So probably this is the last time for transfusion to maintain his Hb for 4 more days till the transplant...His WBC counts are 1.29 and platelets 180 thanks to the chemo cocktail...
Masumi will undergo the bone marrow removal/aspiration under general anesthesia on the 29th at about 10 am local time and Mohanish will be given the marrow after the lab processing in the afternoon around 4 pm. Also the cord blood will be given that time. I am still not sure about how the peripheral blood stem cells will be harvested, but no blood has been taken from Masumi so far.
It is nice that the days seem to be flying...faster the better!
Take care everyone...will write in when I can...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Manal on October 26, 2009, 04:57:35 AM
The big day is approaching, everything is going perfectly and i am sure it will continue in the same way. Madhavi, you are a wonderful parent and doing the best for your children. You and your family are in my prayers :hugfriend

Take care and be strong
 :hugfriend
manal


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 27, 2009, 12:13:55 AM
Constantly keeping you and Mohanish in my prayers,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 27, 2009, 10:09:52 AM
Day 19-
ATG took its toll on Mohanish yesterday and led to a fever upto 39.8. But fortunately the effect lasted only a day and thanks to the ice pack, the ibuprofen and the prayers....he is back to himself now. But yesterday was the day I really saw what chemotherapy can do with its side effects and affect us all too! Gladly, just yesterday! :biggrin
Masumi has had 3 shots of the granulocyte stimulating factor so far to stimulate her bone marrow.2 more to go now.Tomorrow Masumi will be admitted after 3 pm. She will be kept fasting after midnight till 8 am when she will be taken in for bone marrow aspiration.The procedure will last for about 2 hours. Along with the aspiration there will also be a sort of exchange transfusion for her where half of her blood volume will be let down for Mohanish and simultaneously replaced. After that she will be in the hospital for a day for observation.
So I will get back to you all after that.
For Mohanish, we may need to get some donors ready for the supply of platelets. Thankfully, we have a good group of friends with good contacts so we now have about 15 names in that list and hopefully they will suffice!
Take care everyone and your prayers are really helping us a lot!
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on October 27, 2009, 10:25:09 AM

Manal is right. The big day is very close now, Madhavi. Everything up to now came out normally, even Mo's fever...something to be expected, I guess. Best of luck for you and your family. May your dreams come true and thal be a long gone experience.

Lena.


Title: Re: Mohanish and his transplant
Post by: Emby on October 27, 2009, 02:17:40 PM
With beautiful patience comes beautiful reward...
.... :pray for you all..

Emby


Title: Re: Mohanish and his transplant
Post by: nice friend on October 27, 2009, 02:54:38 PM
Always praying for Mo ... may God bless him with the best of the health and a life full of health n happiness ...

Best Regards & wishes
Umair


Title: Re: Mohanish and his transplant
Post by: Zaini on October 28, 2009, 06:01:27 AM
Wishing you all the luck in the world my friend :hugfriend.


Title: Re: Mohanish and his transplant
Post by: jade on October 28, 2009, 07:21:19 AM
Hi Madhavi

Remember that we are all there with you in thoughts even if we cannot be there in person. :hugfriend  Wish you Good luck.

Take care
Jade


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 28, 2009, 10:19:06 AM
Dear Madhavi,

I hope that both of the kids are doing well  :hugfriend  Sending best wishes to them both.  I hope that you will take good care of yourself at this time, I know that you are thinking about your kids - but as they recover they will need you to be strong and healthy.  Be sure to get lots of rest and to eat well.

Sending lots of love your way my friend,

Sharmin


Title: Re: Mohanish and his transplant
Post by: maha on October 29, 2009, 01:31:09 AM
Hi Madhavi
Today is the big day. Sending loads of wishes mo`s way. Like Lena said may thal be a long gone experience for you and your family. Praying that the outcome of mo`s bmt goes the way you want, the way each and every member here hopes and prays for.

take care
maha


Title: Re: Mohanish and his transplant
Post by: zahra on October 29, 2009, 07:51:25 AM
Wishing Mohanish and Masumi the very best of luck
Zahra


Title: Re: Mohanish and his transplant
Post by: nice friend on October 29, 2009, 09:01:14 AM
Hi manojmass,
Thanx for the update , wishi u, your family and especially to Mo all the best of luck health n everything ..

lots of Best Regards

Umair :)


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 30, 2009, 01:50:14 AM
Day 19/20/21-
Yesterday was the toughest day so far and so will try to see how best I can put in this post.
Masumis procedure lasted for 4 hours and then she was cranky for about 4 hours or so after that.I couldnt keep her fasting for any longer then and had to give her milk. She was ok by night and absolutely fine today and so we are home now...
Yesterday, Mohanish had a high fever which was adamant and peaked upto 40 deg and then stayed around 38-39. It was accompanied with rigors and tachycardia-his heart rate was between 160 and 170 per min. He has contracted a bacterial infection and hence he was going into shock. After almost 12 hours of efforts put in by the entire team in there, he is improving now. His fever is lower now. He has responded to the antibiotics and his heart rate is stable between 100-120 now. About the transplant. Yesterday half of it was transfused and today the remaning half was. It was discontinued because of his condition.
We had our friends there till almost 11 in the night and one of our friends spent the night outside the glass window just so he could 'be there'...I was with Masumi in the ward 3 floors below. The others had to reluctantly return home because there was nothing much to do but pray. The doctors had said that if the fever and tachycardia could not be controlled by morning then recovery would be close to impossible. But prayers and the efforts have helped and he is better now. By the time I was home, the bone marrow would have been transfused and in the afternoon the cord blood will be too. If needed then Masumis blood will be transfused too, but as of now the other two should be enough said the doctors.
Masumi has some pain and discomfort but else she is doing fine.
Do keep your prayers flowing in friends.......
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on October 30, 2009, 09:30:23 AM
Madhavi,

Its good to hear that his fever is lowered,i am sure he'll be fine,all our prayers are with you,be strong :hugfriend.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 30, 2009, 09:52:01 AM
Madhavi,

My prayers are always with you and you children.  What a difficult time that you endured, I am hoping and praying that Mohanish recovers from this very soon. 

Take good care of yourself,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on October 30, 2009, 02:17:17 PM
Praying for you in this very difficult time. Hopefully the infection is now under control and all will go smoothly.
May Sri Krishna keep you hale and hearty.
Jai Sri Krishna

 :getwell


Title: Re: Mohanish and his transplant
Post by: opkaram on October 30, 2009, 07:53:11 PM
Madhavi -

Our prayers are always with you and your kids, I am sure that god will give all strength to you and Mohnish to overcome all hurdles and come out with great sucess.

Take care !

Regards,
Om


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 30, 2009, 08:08:28 PM
Madhavi,

Hoping to hear an update from you soon.  Hoping that all is going smoothly.  Sending more prayers you way.

Sharmin


Title: Re: Mohanish and his transplant
Post by: maha on October 30, 2009, 10:52:49 PM
Dear Madhavi
Hoping that Mohanish has recovered from his infection. Our prayers and well wishes are continuously with you. Waiting to hear from you.

take care
maha


Title: Re: Mohanish and his transplant
Post by: nice friend on October 31, 2009, 01:01:36 AM
Hi manojmass,
i hope n wish that your son has recovered from infection and doing well now ... your Son is always in my prayers , wishin him a Succesful BMT with a super seccesful  post BMT results .....  sending Lots of Best Wishes , lots of regards and lots of prayers his way .. :getwell Lil-Champ, :getwell .... waiting for update ..

Best Regards
Take Care
Umair


Title: Re: Mohanish and his transplant
Post by: Zaini on October 31, 2009, 01:07:36 AM
I just called Madhavi and she is in hospital with Mo right now,we didn't talk that much because of that but once she gets home,i hope we'll get an update.

Hoping to hear all is well my friend :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Lena on October 31, 2009, 06:24:23 AM


 Madhavi,


 I hope everything is o.k with Mo's  infection and tachycardia. I hope things returned to normal, the transplant has been completed and  recovery is ahead. My best wishes, I hope everything falls into place soon.

Thanks, Zaini.

Lena.


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 31, 2009, 09:14:13 AM
Zaini,

Thanks for letting us know.  I hope that our little Mo is staying healthy and that the rest of his recovery goes smoothly.

Madhavi,

Waiting for your update.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 31, 2009, 10:16:39 AM
Day 22-
Today Mo is better physically. The oxygen mask has been removed. There is still mild fever but the infection is controlled. The tachycardia has been controlled as well. He has been given a unit of platelets last night as well.
Only he is very cranky and inconsolable. He is a little irritated at the mouth cleansing ritual, the eye and nose drops and the capsules and tablets that have to be eaten.He keeps on asking for me, and my heart tears as I wish I could be with him but all things considered, it is better I am outside. When Zaini called me, I was on the intercom with Mo trying to get him not to cry. He is pacified for a while and then cries again. He is scared, confused, exhausted and basically just 'lost'... It is tough to have the heart be torn between the two kids. Masumi was a little off balance (literally)but fortunately she is back to her naughty self. Today she had her dressing and I saw that she has been 'poked' at 3 spots on each side...It is just like a 'huge' needle prick and will not need dressing tomorrow onwards.
Zaini,I am sorry I couldnt speak to you when you called up. Mohanish was really just (I dont know what word to use to describe his condition!)
Another good thing is that he has some appetite. He was on  vegetable congee for the last 2 days but now is asking for his favourite-pork...and I will oblige him tomorrow at lunch.
Right now he is having oats with milk for breakfast and also some soup with his meals. The quantity of the meals is not much, but not bad all the same.
Thank you guys so much for your prayers and love....I think they serve as a good complement to the medical aid!
Take care everyone....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 31, 2009, 11:08:32 AM
Madhavi,

Thank you for the update.  I am glad to hear that things have improved for Mo physically.  I can understand his emotional state however, but once everything is better it will all be worth it and you will be able to console him.  You have been so brave for the kids, and your efforts will pay off soon.

Much love to your family,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on October 31, 2009, 12:41:15 PM
Hey dear,

You don't have to say sorry,we'll have all the time in the world to talk once Mo is out of the hospital,so no worries :hugfriend ,

Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on October 31, 2009, 06:59:15 PM
Madhavi,

I wish i can give you a big hug, can not say much except that i can imagine how your feelings are at the moment, but i would just like to tell you that Mo is a strong boy and he will make it. Only tr to communicate wih him as much as you can through the intercom

You are always in my prayers :hugfriend
manal


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 01, 2009, 01:52:59 AM
 :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend... and more....
thanks guys............your replies are answered only by these and the tears brimming in my eyes....
More later....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Prets on November 01, 2009, 09:01:23 AM
 :hugfriend

I'm not very talkative here, but you and your family are always in my prayers.

 :yes

Much Love.

 :heartpink


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 01, 2009, 09:15:45 AM
Day 23-
Mohanish is doing well.Visibly he looks better. He is less cranky now. He ate quite well compared to the last 2 days and maybe because he had his pork!
I tried to cook it the best I could in terms of boiling and cooking it thoroughly.
The platelets were transfused yesterday and did not really affect his counts, so maybe he will be given another unit today or tomorrow.
No fever. The tachycardia is now bradycardia because of the preservatives that are used to preserve the cord blood affect him so! But that is expected and nothing to worry about. His urine output is a little low still as he is not drinking enough water still... So just forcing him to have frequent small sips. Else prospects seem better now.
We had many friends visiting him today. Though he really did not talk much with them all, he was sure glad to have them.
We have a friend here who helped me get the list of prospective blood donors grow as long as 20+! He was happy to visit Mo and see that he is doing better. He has a whole lot of people calling up and following up about Mos progress...It feels nice to have love flowing in from such avenues...
Masumi is fit and fine...and I wonder if when they aspirated the bone marrow, they replaced it with some naughtiness potion! :rotfl She is becoming naughtier since then! I wonder if she is too divine even to be an angel...she just is what one needs anytime in life to be the saviour from whatever trouble we seem to have...seeing her play and smile and just be around makes all the negatives just disappear!
I am tired of saying it, but it is such a blessing to have you all...and you all are always with me in my thoughts and give me so much strength and love that is really the need of the hour!
God bless you all...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on November 01, 2009, 09:19:34 AM

I am so glad everything works fine, Madhavi!

Lena.


Title: Re: Mohanish and his transplant
Post by: Zaini on November 01, 2009, 11:25:07 AM
Its so good to see everything going smoothly,i hope Mo will be home soon, :hugfriend .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 01, 2009, 12:07:12 PM
Madhavi,

It is great to hear that you are surrounded by such love and support.  Mo is going to do really well - he knows that you are close by.  Good to know that Masumi is doing well and that she is making you smile.  I hope that Mo is feeling better and starts becoming "naughty" soon as well  :wink

May your family be blessed wtih excellent health, many smiles and happy times,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Manal on November 01, 2009, 04:17:07 PM
Madhavi,

so glad to read your recent update :hugfriend What is the plan now for Mo, how are the doctors going to evaluate the transplant now???


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 02, 2009, 05:29:27 AM
Day 24-
Mo is doing much better today.
I spoke to his doctor and he said that Mo still has a liver enlargement of about 3 cms but it is not something unexpected. This is a crucial time since his body lacks many a cells especially platelets. Hence he may need to be transfused 1 unit per day.
As of now, Mos input of water and food seems improving and so also his general appearance.
Our friend clicked a few pictures of Mo yesterday and I will put up some at the gallery because I dont know how to get them here....
They will wait for about 3 weeks or so to tell us about the transplant.
So far all looks good...
Thanks again for your love...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Manal on November 02, 2009, 07:19:18 AM
I am so happy to know this update Madhavi, everything seems going well and i am sure it will continue so. Sending continous prayers :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Zaini on November 02, 2009, 08:41:18 AM
Glad to hear Mo is feeling better :hugfriend.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Bostonian_04 on November 02, 2009, 10:27:21 AM
Good to hear Mo is doing well. I think the tough days are over now....

May your family be blessed with health and happiness...


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on November 02, 2009, 11:23:02 AM
Best of luck Madhavi. I read your post and hope everything turn out well for Mohanish.


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 02, 2009, 11:37:09 PM
Madhavi,

I hope that each day is better than the last from here.  Thinking of your family - praying for you all.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Lena on November 02, 2009, 11:45:13 PM
Madhavi,

I wish Mohanish a speedy recovery. For how long is he going to stay at the hospital now?

Lena.


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 03, 2009, 11:28:48 AM
Madhavi,

Thinking about you and Mo.  I hope that things are going well, it feels like we are all going through this together.  Our thoughts are constantly with you. 

love to Mo and Masumi


Title: Re: Mohanish and his transplant
Post by: nice friend on November 03, 2009, 04:42:35 PM
Madhavi,
i  m glad to hear that Mo is doing fine day-b-day , May God bless you n your family with health wealth and  joyful long life ...

Sending Lots of best wishes n regards to Mo ....


Umair


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 04, 2009, 01:31:54 AM
Day 25/26-
Mohanish is doing well. He appears to be doing better everyday...
The platelet count rose enough with the last 2 times they were transfused that he will be transfused another unit only today that is after 2 days.
His blood pressure was a little on the higher side but that was something probably to go hand in hand with the bradycardia that the side effect of the preservative left behind.His ECG also showed some changes, but again the doctor said nothing to worry about unless Mo has any discomfort.Communication poses a little bit of a problem, but once we get in touch with the senior doctors it is better!
What to give Mohanish for food is another hassle in a way. He is craving for pork, but we dont want to give it to him as this particular meat is infamous for harbouring many a living being! So am trying to get him to have chicken and veggies instead. Some of his tastes have changed (except for pork!) but am trying to cook him things he likes because his appetite is good now. What is interesting is that the other Chinese kids are all mostly eating a lot of pork...I checked with the doctor and he said that if cooked thoroughly it is not a problem...
About being in the hospital...well, the doctor had told me long back that it will be atleast 28 days after the transplant to check on the success. Recently he has told my husband that it will be 3 weeks or so before he may shift Mohanish from that isolation room. So we will all just wait and watch...
Each day has something or the other coming up to have us a bit at unrest and then its reassuring to get it clarified from the doctor. The juniors many a times go more by the book and that makes it tough on us!Manoj and I hardly have time to sit and share our concerns/thoughts or just anything...but its only going to get better...It does take a toll on us as well in its own way and sometimes we are arguing and bickering about nothing at all! :rotfl
All in all, everyone we know (including you all)are praying and hope that the transplant will be a success!
Love,
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on November 04, 2009, 03:46:26 AM
Madhavi,

Its great that everything is going smoothly,having a good appetite is a good sign isn't it? Hopefully he'll be home soon.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 05, 2009, 07:08:15 PM
Day 27/28-
Mohanish has had some fever again. But now the doctors know which anti biotic he is sensitive to and so the fever is being controlled better.
Manoj is also a bit shaken up physically and mentally...so I may go inside with him so I may not be able to post here for a while....
Till then keep sending your prayers...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 05, 2009, 09:52:27 PM
Madhavi,

I hope that Mo recovers very soon now.  I think that it will mean a lot to him, having you with him.  You all have been so brave throughout this procedure.  My prayers are with you.  I look forward to your next update, hoping to see a lot more progress soon. 

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on November 06, 2009, 01:51:29 AM
Madhavi,

I am sure Mo would be ecstatic to see you inside,let daddy off the hook for a while :) and obviously Manoj is shaken,its not easy to go through all this,i can only imagine how you guys are handling it so well,i am sure everything will be fine soon and all this will become a memory.

Sending prayers your way :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Prets on November 06, 2009, 03:34:19 AM
I saw Mohanish's new pics in the Gallery, but i noticed they're saved in the section with Lisa's pictures. I kept searching in the members section wondering why I couldn't see them!

Wishing lil Spidey Boy all the luck!

 :smiley


Title: Re: Mohanish and his transplant
Post by: Manal on November 06, 2009, 04:22:36 AM
Madhavi, the pictures are great and Mo looks good. I am happy that you will join him, definetly this will give him high spirit which will be useful for his body. Please give him a big hug for me :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Lena on November 06, 2009, 05:13:31 AM

 Madhavi,

 I have just seen Mo's photos. A sweet, little boy and as I can see he retains a lot of strength inside. He's got a very decisive stare in his eyes. Best of luck for a happy outcome.

Lena.


Title: Re: Mohanish and his transplant
Post by: Zaini on November 06, 2009, 05:22:52 AM
I just saw the pics,just looking at him,i feel like not too long he'll be running outside with no worries,give him a big smooch from me  :kissy :kissy :kissy .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on November 06, 2009, 09:18:05 AM
I've moved the pics of Mohanish to the members gallery. Send him all our love, Madhavi.


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 06, 2009, 09:46:55 AM
Madhavi,

He looks great, he looks strong and alert.  He will be running around, completely healthy in no time!

Much love to little Spidey:)

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on November 10, 2009, 02:28:13 AM
Madhavi,

Hope everything is going fine :hugfriend Hope you are just keeping Mo busy inside :) .

Thinking of you :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Zaini on November 11, 2009, 05:00:50 AM
Hoping to hear from you soon :hugfriend .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Zaini on November 11, 2009, 05:49:38 AM
Hi Guys,

I text msgd Madhavi to know how is everything going and got this reply

"WBCs have begun to form since last four days,Yet to know if his heart is all ok,General condition is good "

:) I am glad to know that.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on November 11, 2009, 08:16:06 AM
This is quite comforting.

Thank you Zaini so much :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Dori on November 11, 2009, 05:24:50 PM
Despite all the hectic here I haven't forgotten about Mohanish. I hope he and the rest of the family is doing well.

Warmest wishes, Dore


Title: Re: Mohanish and his transplant
Post by: samyuktha on November 12, 2009, 09:39:48 AM
Dear Madhavi,

Our best wishes are always there with Mohanish and you and your family.

Mahanish will be there in my daily prayers.He will come out successful and completely cured with this transplant.
Your hard work will definitely bear fruit,dear friend.

God bless you and especially Protect our dear Mohanish.


Title: Re: Mohanish and his transplant
Post by: Bostonian_04 on November 13, 2009, 02:13:39 PM
Madhavi,

Thinking of Mohanish....Praying that all of you are doing well...


Title: Re: Mohanish and his transplant
Post by: Zaini on November 14, 2009, 01:34:09 AM
Hope to hear from you soon,praying for Mohanish :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on November 15, 2009, 07:41:18 AM
Wish u best of luck Mo.............
Praying for u............


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 15, 2009, 12:38:25 PM
Madhavi,

Hope to hear good news about Mo from you soon,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 15, 2009, 10:51:21 PM
Hmmm....
Sorry I have lost the count...
I am out now because Masumi was missing me too much.
Mohanish still has some infection. It is under control now as per the doctors talks this morning. Today he is scheduled for a CT scan to check out his head/chest/abdomen.
His WBC had begun forming earlier than expected but were controlled and are now behaving normally i.e they also rose to the occasion of infection!
I will post in much more after the tests are done today.Have lots to share with you all,will put it all in later...
 He seems to be better and braver than us both...Mohanish is sure brave physically as well as mentally to be through it all...
Till then thanks again for your wishes and love. They really help us all....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 15, 2009, 11:41:20 PM
Thanks Madhavi,

I am glad that Mo is doing well.  I hope that the infection clears soon.  I hope to read all of your updates soon.  Sending prayers and warm wishes to your family.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on November 16, 2009, 12:50:42 AM
Glad to have an update from you :hugfriend Do take care and i hope everything will be fine soon.

Zaini.


Title: Re: Mohanish and his transplant
Post by: afaf el amoudy on November 16, 2009, 02:10:44 AM
Hope that Mohanish will be ok ,goodluck all of us praying for him


Title: Re: Mohanish and his transplant
Post by: Manal on November 16, 2009, 05:13:03 AM
Mo is in my prayers, will be waiting for the update :hugfriend

Much love to you

manal


Title: Re: Mohanish and his transplant
Post by: Dori on November 16, 2009, 05:17:01 AM
Thank you for the update.
My love to you all.
Dore


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 16, 2009, 10:02:42 AM
Today, we got a CT scan and an Ultrasound done for Mo. Ultrasonologist said its normal. The CT guys will give us a paper-report tomorrow but as of today did not find anything 'bad' or problematic.
Mohanishs fever is controlled. He was up and playing with his toys and drawing in the evening. He had dinner-all of it, after almost 3 days. Manoj is much more stronger now than before...
I was thinking about you all a lot when I was inside. There was so much I wished I could have shared with you all...
I had some time to think, question things, wonder out to myself about many a decisions, rationalise things out, and much more...
It was nice to be in there-with Mo. Try to spend such time with him is something like a blessing in disguise. I realised how much we love each other and how well we vibe...I understood so much more of him and also how much strength he has physically and mentally.
I questioned myself about how good a mother I was to both my children. How some of the pain that they have gone through is something I have subjected to them knowingly in a way. Then I convinced myself that he is young enough(rather they both are...)to forget all this and remember only the good things later in life.
I saw such an excellent team of medical and assisting personnel in the ward. Despite being the only foreigner patient there, we were still made to feel so much 'at home'.
I was in awe of medicine as such because it can do so much more than even what we just dream of.
I was blessed to have my son in the able hands of his doctor, Dr.Li. Just seeing him makes us feel much more at ease. This morning he reassured me about the CT Scan saying, 'Dont worry'...I told him that I dont worry at all because they are all there to care for Mo. And honestly friends, I mean it.
Despite the fever, infection and whatever, something within me tells me that nothing can go wrong because he has such fantastic people looking after him...
When Mo became a little cranky/irritated at the attending staff(especially when they do the dressing for his central line), I told him a story...That when he prayed to God to help him, God said He would send His helpers since He cant come personally....so he had Masumi to start with, then Dr.Li, Dr. Wu, the junior doctors, the nurses, the 'aai's(maid/helpers)in the ward...He is a little more tolerant towards the staff now!
I was happy to see all the children being discharged and going home happier...
Of course there were 2 children who were not that lucky, but I just couldnt explain how I could deal with that and so looked at it all as a remote audience and tried to save myself from extra worries...
To those who were considering BMT. It is not an easy thing, although lot easier than what I had myself imagined it  to be. The worst thing in it all is seeing the child in pain and feel somewhat responsible for it. I dont know if I can say whether one should or should not go ahead with it...seeing the 10 out of the 12 in patients in good form does not necessarily make the other 2 disappear from the calculations...but hope and optimism always rule supreme and make us believe and do things which too much logic may not!
About us, our ordeal is not completely over yet. But most of the hurdles are crossed. As of now, the WBC are being formed. The platelets are not yet(they are the last to do so). The hemoglobin has been dropping since the last 2 days as also the RBC. The doctors did not worry much about that when I expressed my concern. They know much more than us for sure! :rolleyes ??? But one is always too keen all the same! So we disturb the doctors with our concerns oh so often and are always met with patient answers. It is not so easy for them, mind you, to do that especially when they have  to take extra time out to think out the answers in English!
Back to the positive note...
Your thoughts remained with me there and of course Zaini sent me her love through the message...Thank you guys...Manoj and I will be so lucky to have found so many loving friends-all at once....
Lots of love from all of us....to all of you....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on November 16, 2009, 10:17:07 AM
Madhavi,

I am really happy to hear that Mo is doing well. When I was 2,5 years old I was operated for splenectomy and these were the first images of me I bear in mind. Even though children remember after the age of 5 years, I remember myself at that age of 2 and a half, as images were too vivid to forget them. Now I try to contemplate how my life would have been, if that operation was a BMT instead of splenectomy and I really cannot grasp it. Mohanish will be lucky enough to live it. I wish the day will come when he gets out of hospital leaving behind any suffering and he will be among his loved ones with a brand new life. Really.

Lena. 


Title: Re: Mohanish and his transplant
Post by: Manal on November 16, 2009, 06:33:44 PM
Quote
I realised how much we love each other and how well we vibe...I understood so much more of him and also how much strength he has physically and mentally.
I questioned myself about how good a mother I was to both my children. How some of the pain that they have gone through is something I have subjected to them knowingly in a way. Then I convinced myself that he is young enough(rather they both are...)to forget all this and remember only the good things later in life.


Madhavi,
I am really so touched by your words and feelings, you are such a brave and woderful parent and i am sure your children will always be proud that you are their mum :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on November 16, 2009, 06:56:40 PM
Madhavi,

I want to mention that Chuck, who had a BMT last year, also had drops in Hb early on after the transplant and even needed a few transfusions. His Hb is now hovering around 9 or so, which isn't great but it's high enough to avoid transfusions. He was a thal minor and theoretically is no longer, but his Hb is lower now, after the BMT. So, what you're seeing in your son is quite normal in the aftermath of the BMT. You are also quite informed about the white blood cells. Indeed, this is a very good development and gives him some immune protection and also demonstrates that things are moving in the right direction.

I don't know if there's a more difficult decision a parent could make than the one regarding whether or not to have a BMT done on their child. It takes much courage and faith to make this decision and much strength to endure the whole process. You have done an admirable job through all of this and it's quite inspiring for any parent who knows you. Stay positive and resist any doubts. You can only go forward.


Title: Re: Mohanish and his transplant
Post by: Zaini on November 17, 2009, 11:01:06 AM
Madhavi,

I am sure Mo is gonna remember how and what you did for him,you and Manoj ofcourse,one day when he'll become a father himself he'll be more and more thankful to you,isn't that true that we realize how our parents must have felt and what they must have done when we become parents ourselves.

I am happy Mo is going strong and i am sure nothing bad will happen as so many people are praying for him :hugfriend .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on November 17, 2009, 07:28:50 PM
its good to hear that Mo is doing good. ..........
Wish him best of Luck!!!!!!!!!!!!


Title: Re: Mohanish and his transplant
Post by: Madhavi on November 18, 2009, 11:35:38 PM
Mos results of today are good. WBC on the normal rise. As also RBC and Hemoglobin. Platelets will take time as expected.
Manoj has caught cold and so I am going in again as per the doctors advice.....
Catch you later.....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 18, 2009, 11:46:42 PM
I am glad that Mo's results are looking good.  Praying for continued good news.  I hope that he recovers from his cold very soon.  Take good care,

Sharmin


Title: Re: Mohanish and his transplant
Post by: nice friend on November 20, 2009, 07:46:21 AM
Hi Madhavi ,
good to hear that everything is going fine with Mo till now , and hope n pray that everything will remain fine uptill the end of his treatment ... wishing Mo a super joyfull healthy  life ....

Best REgards
Take Care
Umair


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on November 30, 2009, 09:48:03 AM
Looking forward to get Little Mo's progress. Hope he is doing fine.



Title: Re: Mohanish and his transplant
Post by: Sharmin on November 30, 2009, 08:06:39 PM
Madhavi,

I am also waiting to hear more good news about Mo's progress.  Praying that all is going well.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on December 01, 2009, 12:12:54 AM
Sorry sorry guys,forgive me,last three days were just crazy coz of eid and Madhavi did text me yesterday but i couldn't come online,she wrote

"Mo's genetic/chromosomal test says BMT engraftment  is 100% .His counts are rising steadily,almost normal range now,Dr may have him shifted out of isolation in a day or two,he is looking his old naughty self :biggrin Love to all on the Forum".

I am so happy for Mo,Hope we'll be able to talk soon Madhavi :wink .

I am happy i am bringing a good news on the forum for once :yes .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on December 01, 2009, 12:17:48 AM
Thanks for the update, Zaini. That is fantastic news! 100%!


Title: Re: Mohanish and his transplant
Post by: souly on December 01, 2009, 04:32:48 AM
wonderful news. wow!


Title: Re: Mohanish and his transplant
Post by: Dori on December 01, 2009, 04:37:30 AM
"Mo's genetic/chromosomal test says BMT engraftment  is 100% .His counts are rising steadily,almost normal range now,Dr may have him shifted out of isolation in a day or two,he is looking his old naughty self :biggrin Love to all on the Forum".

Great news!!!!!!! :-D


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 01, 2009, 10:09:45 AM
Thank you for the news Zaini.  What wonderful news!  I am so happy for the entire family. 

Sharmin


Title: Re: Mohanish and his transplant
Post by: Lena on December 01, 2009, 11:46:05 AM

 Some dreams do come true!
 Always the best for Mohanish and his family!
 

 Lena.


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on December 01, 2009, 02:22:36 PM
Good News. Thanks for the update Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on December 01, 2009, 06:49:11 PM
Congratulations, I am so happy to know those wonderful news Zaini. Thanks God


Title: Re: Mohanish and his transplant
Post by: Zaini on December 01, 2009, 11:52:23 PM
Some dreams do come true!
 

My thoughts exactly :yes .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Bostonian_04 on December 02, 2009, 03:04:16 PM
So glad to hear Mo's excellent progress. Congratulations to you, Madhavi.


Title: Re: Mohanish and his transplant
Post by: nice friend on December 06, 2009, 11:14:26 AM
Manojmass ,
Wow , wat a wonderful news it is .... glad to  hear this ....

how is everything going now a days ?? ...

lots  of best wishes n best regards .... :) .........     always praying for Mo , :)

Umair



Title: Re: Mohanish and his transplant
Post by: Narendra on December 08, 2009, 05:13:33 PM
Just talked with Madhavi to wish Mohanish a happy birthday from all of us. She has Thanked all for wishing.

Mohanish is doing fine. He is still in Isolation due to some infection found in the spleen. He is on antibiotics due to this. Mo's HB level is around 9.7. Other than that Madhavi mentioned things are going OK.


Title: Re: Mohanish and his transplant
Post by: Manal on December 08, 2009, 06:14:59 PM
Thanks Narendra for sharing the news

I wish Mo a speedy recovery

manal


Title: Re: Mohanish and his transplant
Post by: Zaini on December 08, 2009, 11:46:12 PM
Thanks for the update Narendra, i texted here a couple of times but didn't get a reply so i was hoping that everything is well and she must be busy with Mo,glad to hear he is doing fine and hope that infection will go away soon.

Zaini.


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on December 09, 2009, 12:23:10 AM
May infection say Good-bye very soon

Abbas


Title: Re: Mohanish and his transplant
Post by: Prets on December 09, 2009, 07:51:59 AM
Hoping Mo feels better soon, good to hear about the BMT.

Prayers and Bless ..  :-)


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 10, 2009, 01:39:49 AM
dear freinds
thanks  to u all and ur prayers mohanish is doing fine  now  his wbc  count is  5.16  today ,hb is 99,plt is 127 and rbc  3.83
his  infection  is  also under   control  we had  to  do a pet scan last week since  his crp  level  was  higher that 5 (its c reacting  protien in the body  from which the  docs know if there is  any infection hidden inside the body  )it was almost 15 ,  his   his  bacteria culture report showed no bacterial infection,also we had  done the  ct scan but  could  not find any thing .
so the doc advised  the pet scan which was an expensive affair, after the pet scan they  found some  inflamation in the  spleen  the drs say its very minor one  and they have  started  penicillin  drug at a lower dosage level  on the 8th  after that his crp level as of  today is  is  4.8 which his  good  news and his parameters are also normal  so i guess its  just matter of  days he will be  discharged,
mo is back to his  usual naughty side which  makes me feel very very happy and elated with joy ,i and  my family will be thank full to u all for all ur prayers ,thank u narendra  for calling   thanks  zaini  for ur updates to every one ,its  just a miracle  happened in my life and  god had  send this  lovely angel in  form of  masumi  to cure his brother ,i was  so happy to know the result when  dr li broke the news  about 100% success engrafment of xx gene in his body ,i really believe  miracles can happen if u are true to  god  and ur self ,mo is  shifted form the isolation  ward to the previous normal ward he was admitted

thanks once again to u all and  will keep u posted from now on  ,from  my experience bmt is a difficult process but its worth giving a try to all parents who wants to go for their  child,   it was a very difficult   decision for us also to do it for our  son  but then we were optimistic about it that nothing bad  can happen  to him and all  will be well .we had  our  share of highs and lows in the hospital but  all in all it was  worth ,and he was treated  with able  hands of  dr li and his  team

hearfelt  thanks to all u freinds from me  and my family


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on December 10, 2009, 03:03:42 AM
its too good to hear that Mo is doing well.......
i agree that miracles do happen in this world.........
Take care of Mo.....

Abbas


Title: Re: Mohanish and his transplant
Post by: Prets on December 10, 2009, 06:43:57 AM
This is great news!

:-)




Title: Re: Mohanish and his transplant
Post by: nice friend on December 10, 2009, 09:12:07 AM
Hi ya Manoj Mass,
its  nice to hear that everything is fine y now n going fine ... i hope n wish that he will b cured 100% .. always praying for him .. may God bless him with all the luck n everything :) ..

Best REgards
Umair


Title: Re: Mohanish and his transplant
Post by: Zaini on December 10, 2009, 11:16:56 AM
Madhavi,

I am really really glad to hear about Mo,can't express it in words, :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on December 10, 2009, 01:19:15 PM
Madhavi,

You can not imagine how happy i am. Though we were all encourging you from the time you entered the hospital, i was so afraid too and anxious cause Mo is like my son and usually BMT results could not be predictable. I used to wait for your posts and sometimes afraid to read them lest i find anything wrong.

But now, thanks God the BMT has succeeded and Mo has a new life to begin and you too as his parents won't have anything to worry inshallah. I am so happy for you and for your family and mostly for Mo, he is a fighter. Sincere congratulations from the heart to you my friend and to your family

manal


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 10, 2009, 08:26:49 PM
thanks  manal ,zaini umair,abbas ,preety,narendra   and all our  freind thank u so much   for ur r prayers and encouraging   words   we really appreciate it ,i and my   my wife are  so much  thank full to u  angels  out there
 we  used  to tell mohanish  about our extented  family (u all  ) about  how much they care   for u and love u , and iam  sure  he   would  want to meet u all,
the docs have still  not stopped the antibiotic  which  they will in a day  or  2  after monitering his crp level ,
after  starting penicillin his  crp level was  down from 8.7  to  4.8 yesterday ,will wait for todays  results
mohanish is  so much  longing to  go home  and meet his littel sister masumi  ,also give me a tight hug...
but  i told him to be a little  more patient till the docs make  him   more  stronger,like  bat man and  spider man
yesterday i gave  him one of  his  favourite  toy batman and  his  mobike,  he  was  so much happy
 another bigger  bat man  toy  awaits him at home i i told him cause the drs  wont   allow  too many of them

thanks  freinds  once again will keep u posted
manoj


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 12, 2009, 10:02:56 PM
hi freinds
mohanish is  doing fine 
docs have atsrted antivirals since  11th dec   will continue for 7   days  and after  that  they will moniter his  condition and discharge him
penicillin they will continue till tomorrow and then  discontinue since his crp level is 3.8 now  which is at the  lower level

mohanish has given his  love to all

bye  for now

manoj


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on December 12, 2009, 11:22:09 PM
Glad to hear good news that Mo is fine!

Abbas


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on December 12, 2009, 11:35:53 PM
It's great to see things progressing nicely. Looking forward to reading that he's going home.


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 13, 2009, 12:27:50 AM
I am glad to hear that Mohanish is improving and getting stronger every day.  I hope that he completely recovers very soon.  Sending prayers and love to Mo and the family.

Sharmin


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on December 13, 2009, 12:07:00 PM
That's great news. It is very encouraging that Mohanish is improving and will be discharged very soon.

 


Title: Re: Mohanish and his transplant
Post by: nice friend on December 13, 2009, 01:13:07 PM
 :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 13, 2009, 11:02:12 PM
Hello everyone....Madhavi here again!
Masumis mother got the better of Mohanishs mother yesterday when she wouldnt respond too much to me...so I came out!
Let me begin by thanking you all once again-Zaini for the messages-only I did not get them at all after the ones during Eid! Narendra for the phone calls....All of you for the love and wishes....
Manoj was elated to be in touch with you instead of me and very thrilled to get a first hand experience of your love!
Mohanish is doing great and enjoying the paid hospitality for another week more...it is better now since it is a room where there are 2 beds-one for him and one for the parent...he jumps from one to the other...he spends his time playing with the toys-Spiderman,Goblin,Batman too! And also enjoys playing with the nurse-'sisters' as they are called. I put up some cut outs of letters saying Happy Birthday Mohanish and 4 for his age on a glass pane in the room,the nurses gifted him with a wipe-away slate and pen to draw and doodle to his hearts content, and we made balloons out of rubber gloves using the Oxygen vent! His Dr.Li was out to the US then, but gifted him with a lovely box of chocolates on his return 2 days later! He is picking up the medico lingo there-angiocatheter,iv infusions,cell counts,etc and lots more in Mandarin!
I missed you all a lot and spent a lot of time writing there...I will put up some of that here soon...
His counts are all within normal range now...and are maintained in that range but go up and down...right now we just wait for the antiviral(for CMV) and antibiotic(penicillin)therapy to be completed-which should be hopefully by this weekend.And then I am going to read out all the posts and translate them to him when he is home...and he can see all his loving extended family here!
Take care all of you and lots and lots of love from all of us.....
Madhavi
Just a tiny update for now...


Title: Re: Mohanish and his transplant
Post by: Zaini on December 13, 2009, 11:59:06 PM
Madhavi,

Its great to hear from you again  :hugfriend i am glad Mo is doing better,i don't know why my texts didn't reach China  :mad as they did before,i hope we'll be able to chat soon. :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 14, 2009, 09:43:00 AM
Madhavi,

It's great hearing from you again.  I am glad that Mo is doing so well and wish him continued strength and wellness.  It sounds like you all are making the best of the situation for him - you are wonderful parents. 

Please give Mohanish and Masumi my love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Prets on December 15, 2009, 08:18:50 AM
Madhavi,

This is GREAT news! Wish you all the very best!

Looking forward to see more pics of our very own spiderman in action!

Much Love to the family, God Bless.



Title: Re: Mohanish and his transplant
Post by: Madhavi on December 16, 2009, 08:56:57 AM
Just waiting for Mohanish to be home now...most likely he will be home by friday noon here....
Will tell you all about it then!
And yeah will put up some pics of him at home finally...in the clothes he was missing so much!
Nothing much to post as of now....
Lots of love to you all lovely people....
Madhavi


Title: Re: Mohanish and his transplant
Post by: nice friend on December 16, 2009, 09:23:29 AM
Manojmass,
 :) Happy for you lil Mo ... :) ... May GOD bless you  :)...

Best Regards
Umair


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 16, 2009, 09:36:30 AM
THE ALPHABET OF BMT!

Abundant thoughts,
Blank as well...
Calm at times,
Desperation too dwells...

Elated a moment,
Fretting over something the next,
Gods visit mind and heart,
Hope rules the rest...

Intelligence and ignorance battle,
Jargon of the procedures plays,
Kudos to the team that attends
Laughter too on the 'happy' days...

My son,Mohanish-aware yet unaware,
Nothing tells me not to think of positive,
Overboard with love,wishes,prayers,hope and faith
Presence of vibes-goodness,blessings to give...

Queries galore,answers seem incomplete,
Realisation,some repentance then acceptance,
Strengths tested, sorrows suffered,
Truth here yet not, trying our very existence...

Utter chaos, unlimited anxiety,
Vocal and non vocal expressions of it all...
Worship, beliefs, superstitions and some more...
(E)Xpedite the times, make us recover from falls...

Yet, never question the outcome in the end...
Zapped by us and the others, still unfazed...
The alphabet of BMT is such....
Efforts put in for the monument of a better life to be raised!

This is amongst the few things I wrote in there....
Madhavi


Title: Re: Mohanish and his transplant
Post by: nice friend on December 16, 2009, 09:43:13 AM
Feeling Happy for Mo :) ....

Best Regards
Umair

( sorry , for this much short post ... will cathc u ppl sooner or later , but, surely i will back in form   :wink )


Title: Re: Mohanish and his transplant
Post by: Manal on December 16, 2009, 08:13:42 PM
Madhavi,

What a creative poem :biggrin, you are so talented

Congratulations my friend :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin

manal


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 16, 2009, 08:51:30 PM
Madhavi,

I am so glad that things are going so well for Mo.  I look forward to hearing that he is home and to seeing your pictures!

Take good care,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Zaini on December 16, 2009, 10:14:12 PM
Glad to see your inside poetess is still working  :biggrin Love to Mo,Hope to talk to you soon  :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on December 17, 2009, 12:31:11 AM
Happy to know that Mo will be at home soon........
take care of him

Abbas


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 18, 2009, 01:37:31 AM
Mohanish is home today....
It was a sight to see Masumi hug him again and again and  not leaving his side at all.....
Will post the pics soon and details later....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on December 18, 2009, 03:52:41 AM
Madhavi,


welcome Mohanish home on my account and give him a big hug  :hugfriend
I wish everything will continue to be as perfect as it already is.

Lena.


Title: Re: Mohanish and his transplant
Post by: samyuktha on December 18, 2009, 08:15:23 AM
Iam Very happy  :smiley for Mohanish,His parents and his sister Masumi.
God bless this lovely family for ever.
Hi Mohanish...our best wishes are always there for you  :flowers .

Take care,
Viji


Title: Re: Mohanish and his transplant
Post by: Zaini on December 18, 2009, 11:45:43 AM
Madhavi,

Please give him a big smooch :kissy :kissy :kissy  :love :love :love I hope every thing will be ok ,hope to catch you soon :hugfriend .

                                   
                                           (http://i56.photobucket.com/albums/g167/bellaginaxo/20098-Welcome-Home.jpg)


Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on December 18, 2009, 04:34:00 PM
Congratulations Mo, love you soooooooo much sweetie
 :welcomewagon :yay
manal


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on December 19, 2009, 09:51:15 AM
Mo, enjoy home sweet home.........
good luck,
Abbas


Title: Re: Mohanish and his transplant
Post by: nice friend on December 19, 2009, 01:42:59 PM
heyyyyyyyyyyyyyyy,.................... WELCOME BACK HOME !!!!!!
(http://schools.bvsd.org/les/welcome-back-chalkboard-sign400.gif)

Umair


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 19, 2009, 04:55:37 PM
Mo,
(http://www.musicforgifts.com/ForHome/WelcomeHome2x2.jpg)

Sharmin


Title: Re: Mohanish and his transplant
Post by: nice friend on December 20, 2009, 05:19:19 AM
:)


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 21, 2009, 11:09:55 PM
Have put up some pictures....
Will put up those with the doctors...they need editing.....too large to be uploaded...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Fadd on December 22, 2009, 11:06:57 AM
WELCOME BACK HOMEEEE!! Mohanish

Fouad


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 22, 2009, 12:24:00 PM
Mo looks great!  May he continue to gain strength so that you can leave all of this behind. 

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 22, 2009, 10:14:15 PM
A little caught up with getting things settled at home.....plan to write in at length to you all....Sorry for that delay!
Till then thanks for your love and wishes.....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Madhavi on December 24, 2009, 12:16:52 AM
Right now Mohanish is on a couple of medicines....thought you all might want to know....
1)Ciclosporin-which is for immunosuppression and he will be on it for a year...on a tapering dose.
2)Ursodeoxycholic acid-which will aid in the liver functions and he will be on it for 6 months.
3)Sulfomethoxazole-an antibiotic which he has to take thrice a week for 3 months.
4)Amlodepine-anti hypertensive that he has to take till his blood pressure is back to normal.
5)Calcium and Vit D
He has to go for weekly blood tests and to meet the doctor for 3 months, then it becomes a monthly visit.His chromosomal test will be again next week and then after 3 months again.
At home, he is should be isolated as far as possible.There are no dietary restrictions as such but no raw foods. He can start going out gradually after 3 months, but avoid crowded places and those with many kids....he can begin schooling only after a year.
And another thing, he may need to be on desferal for a while again after a month or so. This is because his ferritin pre transplant was around 1500...so till it is normalised he will need to be chelated.
It has been a little hectic since the time he is home since we are still establishing a routine and so the delay in my mails....
Take care all of you and your love is all over our home and hearts....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on December 24, 2009, 01:08:46 AM

Madhavi,


Noone can claim that a BMT is an easy thing. It seems you have to go on struggling for a while, but  the main battle is behind you now. I hope everything is under control. Mo is always in my mind.

All the best,
Lena.


Title: Re: Mohanish and his transplant
Post by: Sharmin on December 24, 2009, 01:58:25 AM
Thank you for the update Madhavi,

Our thoughts are always with you and your family.  As Lena said, this has not been easy for you but the most difficult part is behind you - may the days ahead be progressively brighter and happier :)

Much love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Fadd on December 24, 2009, 02:04:09 AM
Its okay with the delays in posts...
Take good care of little Mohanish and also your selfs.
Best wishes an prayers.

Fouad


Title: Re: Mohanish and his transplant
Post by: Prets on December 24, 2009, 05:49:32 AM
Madhavi,

Do take care, Love and Bless you all!

 :hugfriend


Title: Re: Mohanish and his transplant
Post by: Manal on December 24, 2009, 06:41:44 AM
All the best Madhavi, take your time and rest too as much as you can :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Dori on December 27, 2009, 08:04:51 AM
Thank you for the update. I have been awhile for some time, but Mo was in mind. I do agree with Lena.
Warmest wishes


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 04, 2010, 04:02:04 AM
These are the side effects of bone marrow transplant from my point of view....

I)FOR THE CHILD
A) Physical
1)Effects of chemotherapy and medication during the transplant process
2)Constraints of confinement
3)Change of routine,habits,appetite,diet,appearance
B)Mental
1)Confinement
2)Isolation
3)Loss of privacy due to dependance
4)Irritation
5)Frustration

II)FOR THE PARENTS
A)Physical
1)Child care in isolation
2)Health changes due to that
3)Care of self in the time of physical and mental stress to ensure best care and environment for the child
B)Mental
1)Seeing child in pain
2)Being prepared to see any and everything
3)Anxiety post transplant till a decisive result is in
4)Comparison with the other patients in the ward
5)Emotional reaction to each happening and event
6)Effect on interpersonal relationships
C)Others
1)Financial strain
2)Away from work and other family during the phase of hospitalisation
3)Changes in life once the child is home for a period of 6 months to 1 year

This is what I felt and did not really come across much when I was trying to see things online before...They only focus on the medical aspects of it all....it is indeed so much more than just that....
Some more thoughts from the time I was in the hospital later.....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Sharmin on January 04, 2010, 01:02:53 PM
Madhavi,

Thank you for sharing your experiences, these will be helpful to all parents who consider bmt - to take into consideration. 

I hope that your experiences become more positive from here.  Please lean on us as much as you need to during this adjustment period. 

Best wishes to Mohanish and your entire family,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Manal on January 05, 2010, 04:22:10 AM
Madhavi,

Thanks for sharing, definetly Mo and all the family had past through a lot.

Did the doctors talked with you about long side effects (if there are any) or things to be cautious at???

manal


Title: Re: Mohanish and his transplant
Post by: Dori on January 05, 2010, 01:59:30 PM
Thank you for sharing.
My aoplogies for not typing more, but I am too tired to think good enough in English at the moment.
Best wishes, Dore


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 06, 2010, 02:30:40 AM
No Manal......nothing much that the doctor has told us about long term effects so far...
We got the result for the genetic/chromosomal analysis this week and it shows 100% engraftment and all cells are from the new bone marrow.....His Hb is a little low-10.8 and so we will do a Coombs test next week.
Other than that no other changes in the treatment......
Take care everyone and thanks for following up with us still.....
Love,
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on January 06, 2010, 02:50:23 AM
Madhavi,

100% engraftment and cells from the new bm? that's superb! Good for Mo!
Best of luck for the future! It seems you made the right decision-which, I realise, must have been too difficult for you.

All the best-kisses to Mohanish,
Lena.


Title: Re: Mohanish and his transplant
Post by: Manal on January 06, 2010, 05:41:01 AM
Thanks Madhavi for your reply.

I am really so happy for the whole outcome, you are a wonderful parent :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on January 07, 2010, 03:41:11 AM
congratulations on 100% engraftment from new BM........i m really happy for Mo
best of luck..........

Abbas


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 07, 2010, 04:05:31 AM
Thank you all......Lena,Manal,Abbas.....
For all those who plan a BMT, I would suggest that they first have a family like you all and then get admitted....having a huge support system like you all makes a world of difference!
Love you all guys....you are the best!
Madhavi


Title: Re: Mohanish and his transplant
Post by: Manal on January 07, 2010, 08:59:22 AM

 :grouphug

manal


Title: Re: Mohanish and his transplant
Post by: Sharmin on January 07, 2010, 09:32:10 AM
Madhavi,

I am so glad to hear that Mo has had 100% engraftment.  Transplant was definitely the best choice for him.  I hope that his hg increases with time.  Please let us know the results of the coombs test. 

Sending our best always,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Fadd on January 07, 2010, 10:20:39 AM
Great to hear that genetic / chromosomal analysis has shown 100% engraftment :)
Wishing little Mo very best for the Coombs test next week.

Fouad


Title: Re: Mohanish and his transplant
Post by: nice friend on January 08, 2010, 02:14:54 PM
Glad to hear this good news.. may God bless Mo with alll of his blessings :) ..

Best Regards
Take Care
Umair


Title: Re: Mohanish and his transplant
Post by: Bostonian_04 on January 11, 2010, 12:43:47 PM
Madhavi,

Great to hear about 100% engraftment. Very happy for little Mo and your enitre family.....May health and happiness be with you always....


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on January 12, 2010, 11:28:25 AM
Congratulations........

Wishing happy and healthy life for all of you.


Title: Re: Mohanish and his transplant
Post by: Dori on January 12, 2010, 12:02:07 PM
We got the result for the genetic/chromosomal analysis this week and it shows 100% engraftment and all cells are from the new bone marrow.....His Hb is a little low-10.8 and so we will do a Coombs test next week.

Congratulations!!!!!

Since I follow more humans who have had a transplant I wanted to ask on how many meds little Mo is. And of they are IV or oral. My apologies for all those questions.


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 12, 2010, 11:08:44 PM
Dear all...............
We got the Coombs test result and it shows no problem.
The low Hb level is probably due to the fact that his donor Masumi is also a minor. This week the Hb is 10.9 (last week it was 10.8).
Dori, about the medicines....he is on 4 oral medicines at home and he will be given iv antiviral therapy on and off-the first time next week-ganciclovir twice in that day on out patient basis. At home he is on immunosuppresant(ciclosporin-the dose of which has been tapered since today and he will be on it for a year in all),anti hypertensive (amlodepin-till the bp is normalised), sulfomethoxazole (to prevent infection and he has to take it till 6 months of bmt) and ursodexycholic acid (for the liver which he will be on till 3 months of bmt)...Other than that there is calcium supplement but that was on previously as well.....
His serum ferritin will be checked after 3 months of bmt and then he will be chelated till the levels are normal.
If there is anything else anyone wants to ask, please feel free......I wish I had someone to ask such questions before went ahead for it.....especially from someone who has experienced it! No problems about answering them to the best of my ability.....
Love,
Madhavi


Title: Re: Mohanish and his transplant
Post by: nice friend on January 17, 2010, 06:49:36 AM
Hi Madhavi ,
m not good at medical kind of stuff, ...  i hope Mo is doing well .. wish him best of luck :) ..

Best Regards
Take Care
Umair


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 26, 2010, 10:24:25 PM
Hey all...
Happy to be sharing this with you....
29th of this month is 3 months to the day of transplant....Now on Mohanish is only on 2 medicines! No more medication for his liver and blood pressure!
The doctor said that we can take him down for a walk when there are few people around...for about 10-15 mins....so Mo is thrilled about that!Less bondage!
Time has flown by and all is going well thanks to your love and supportl...
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on January 26, 2010, 11:22:06 PM


Great news, Madhavi!

Time really flies and I am sure this 15 minutes walk will make Mohanish feel like he discovers life again!
I can also imagine your joy. Best wishes for your next steps to this extraordinary journey.

Lena.
 


Title: Re: Mohanish and his transplant
Post by: ginacappo on January 26, 2010, 11:31:29 PM
I wish Mo, you and your family the best. I am so happy to hear all went well. I haven't been commenting but I have been following his transplant. I am so excited for you as a thal patient I understand what this means for MO. My prayers will be with you Please Please Keep posting not all respond but we are reading........

Gina


Title: Re: Mohanish and his transplant
Post by: Zaini on January 27, 2010, 01:37:21 AM
That's wonderful,time does fly fast,and everything becomes a memory,like thalassemia will be to Mo. :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: samyuktha on January 27, 2010, 06:14:16 AM
Dear Madhavi,

I am happy for you,Mohanish ,Masumi and your husband.God bless you dear friend.As a mother you would have undergone hardships regarding Mohanish's Treatment.Now the fruit of your hard ships is in your hand with Mohanish completely cured.You have Mohanish as a thalassemia free child.Take good care of both your kids and give them all your love.Enjoy your motherhood happily and peacefully.

Take care,
Viji


Title: Re: Mohanish and his transplant
Post by: Fadd on January 27, 2010, 10:06:39 AM
Thats' great to hear....
Love for little Mo  :hugfriend

Fouad


Title: Re: Mohanish and his transplant
Post by: Madhavi on January 29, 2010, 01:14:52 AM
Thank you all guys......
Goosebumps and teary eyed in reply!
Madhavi


Title: Re: Mohanish and his transplant
Post by: Keep Smiling on January 29, 2010, 04:57:58 AM
Madhavi, hats off for u!!! u really worked hard.......
best wishes for Mo

Abbas


Title: Re: Mohanish and his transplant
Post by: nice friend on January 31, 2010, 04:10:23 PM
Madhavi,
lots of best wishes for Mo .... :) ..

Best Regards
Umair


Title: Re: Mohanish and his transplant
Post by: Sharmin on February 02, 2010, 01:57:37 PM
Madhavi,

I am so glad to hear that Mo is getting better everyday.  I am so glad that Mo will be able to forget thalassemia and move on with his life very soon.  No more transfusions and chelation - you taken on so much to give him the normal and healthy future that lies ahead of him.  God bless him every step of the way.  My prayers and thoughts will be with him forever. 

Much love to you and your family,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Cari on February 02, 2010, 09:47:10 PM
I am sure this has been a very trying journey for u and I commend u for being so strong! You r a wonderful mommy and I only hope I can be as strong  for Ari as u are for Mo.  I'm so happy to hear of his progress, bless him and your family !!!  Also, mo's sister should be so proud...so many of us yearn to make a difference in the lives of others our entire life....and she has already accomplished this at such a young age.

sending love to u all
 


Title: Re: Mohanish and his transplant
Post by: Canadian_Family on February 03, 2010, 07:51:03 AM
It is heartening to see Little Mo is doing great.

Madhavi,

Please be reminded that although Little Mo is cured from thalassemia but he still carries thalassemia major genes. For future you need to make sure that little Mo's partner is completely thalassemia free (not even thalassemia minor), even then your grandchildren will be thalassemia minor as they will take beta zero genes from their father.



Title: Re: Mohanish and his transplant
Post by: Dori on February 03, 2010, 11:48:28 AM
I am glad to hear everything is going so well.

Happy days!


Title: Re: Mohanish and his transplant
Post by: Madhavi on February 03, 2010, 09:47:21 PM
Thank you all guys....the joy is multiplied umpteen times when it is shared with you all...
Just got Mo's ferritin levels yesterday-1205. The doctor said that there is no need for chelation for this level as the body will take care of itself. The ferritin is already down since the pre transplant level of 1333.5 without any chelation. So that is another great news to share with you all...
Thanks Carisma...those words are so special...they reflect what a beautiful soul you are...I am sure Mo and Masumi will both appreciate this all through their life.....And I am sure you will be a truly wonderful mother too.
Yes, Canadian family....Thank you for that reminder...both my children are now carriers of the gene and we will have to ensure the thal status of their partners...when you mention grandchildren...it does sound very sweet!
Thank you all guys again...and again...I wonder if I will ever find that much gratitude within me to thank you all for what you have been to us....only a thal gene can bring us to this wonderful forum, to such lovely people...a loss for the non thals!
Love you all friends......
Madhavi


Title: Re: Mohanish and his transplant
Post by: Madhavi on February 23, 2010, 01:01:53 AM
Hi all...
I have put up two recent pictures of Mohanish to share with you all....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on February 23, 2010, 09:42:50 PM
Madhavi,

He looks much much better and cuter,give him hugs from me  :hugfriend

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on February 23, 2010, 11:11:39 PM
Madhavi,

He looks amazing.  God bless. 

Sharmin


Title: Re: Mohanish and his transplant
Post by: Manal on February 24, 2010, 07:28:51 PM
Madhavi,

May God bless him, he is gaining his health back and looks much better than the previous photos. I am so happy for all of you

manal


Title: Re: Mohanish and his transplant
Post by: Madhavi on February 24, 2010, 10:26:54 PM
Thank you guys-Sharmin,Zaini and Manal............all lovely aunties!
Madhavi and Mohanish


Title: Re: Mohanish and his transplant
Post by: Madhavi on March 12, 2010, 05:46:05 PM
Hello everyone at this thread....
Got Mohanishs third genetic test done this week. It shows 100% cells from the new bone marrow again...
His blood counts are all in normal range now...except some minor ups and downs in his liver and kidney profiles..but progressing towards normalcy...
Happy to know that and happier to share it with you all....
Its a foggy morning here in Guangzhou but I wear a pleasant smile on my face as I feel the love at this site each time I visit this thread....
Hope you all have a great weekend....
Madhavi


Title: Re: Mohanish and his transplant
Post by: maha on March 12, 2010, 09:46:06 PM
Hi Madhavi
This is indeed great news. Wishing him continued health. May he jump all the tiny hurdles left with ease.

maha


Title: Re: Mohanish and his transplant
Post by: Manal on March 13, 2010, 07:14:11 AM
Madhavi, thanks for sharning the wonderful news. I am so happy to know that he is doing great :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Fadd on March 14, 2010, 04:30:24 AM
Its all the result of you, your family and Lil M's will power, determination and consistency. Its really wonderful to hear that.
Love for Mohanish :)

Fouad


Title: Re: Mohanish and his transplant
Post by: Sharmin on March 14, 2010, 02:11:24 PM
Madhavi,

What great news!  I hope that all of Mo's levels will be in the completely normal range very soon.  Your patience is paying off each day.  Much love to the kids  :hugfriend

Love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Cari on March 14, 2010, 10:13:59 PM
Wonderful!!!  I'm so happy he is doing so well!!!


Title: Re: Mohanish and his transplant
Post by: Dori on March 29, 2010, 03:07:12 AM
Thank you for the sharing the good news. How is he doing now? I hope all is still ok.
Much love, Dore


Title: Re: Mohanish and his transplant
Post by: Madhavi on March 30, 2010, 11:17:46 PM
Thank you all....
Mohanish is doing fine.
Now our hospital follow ups have been reduced to fortnightly. Soon I hope there will be none as on 29th April we finish 6 months post BMT.
Life wouldnt have been such a pleasure as it is now without you all....I will never get over my love for you all my friends...(not that I ever tried! :rotfl)
 :hugfriend to all of you fantastic people....
Madhavi


Title: Re: Mohanish and his transplant
Post by: Zaini on March 31, 2010, 12:15:04 AM
Wow,how time flies,six months!! it must be a relief :) .


Title: Re: Mohanish and his transplant
Post by: hopefulheart on April 21, 2010, 11:56:22 AM
May God give you the strength you will need to get through this tough time.  I hope and pray Mohanish is healed and can live a normal life.  God bless you!!!

Rebekah


Title: Re: Mohanish and his transplant
Post by: Sharmin on April 22, 2010, 09:40:23 AM
Madhavi,

I am so very happy for you and Mo  :hugfriend :hugfriend  May your family be blessed and may he live a long and healthy life. 

Love Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on April 22, 2010, 09:47:17 AM
Thank you so much guys....it wouldnt have been the same without your love and support....!
Madhavi


Title: Re: Mohanish and his transplant
Post by: Madhavi on May 06, 2010, 03:05:30 AM
Hi friends....
Sorry it has been a while since I posted at the site....
Well, let me share the good news with you all....Mohanish is now 6 months post BMT. He is doing well. His counts are within normal range including hemoglobin....it stays around 11.5 which is what Masumi's is too! The last DNA test again maintains that all the new cells are from the new bone marrow! His hair is back and so is his skin colour.He still fights the memories from the time of hospitalisation but is improving. He can join school in September....Masumi and Mohanish both will join the neighbourhood kindergarten then....He is excited about that since he hasnt ever been to school till now!
He can now move around much more but still we have to avoid crowded places. We took him to a garden close by and he had a ball!I have put up a picture for you all to see him there!
I waited for this moment when I could share this lovely news with you all....6 months post BMT is a big landmark for us to reach...and this journey is so much more special because of you all.....
Thank you my dear friends.................Love you all so much.......
Madhavi


Title: Re: Mohanish and his transplant
Post by: Lena on May 06, 2010, 03:39:26 AM
 

The best is yet to come,

 I am so happy for you and Mo, Madhavi!
 
 
 :hugfriend

  Lena.


Title: Re: Mohanish and his transplant
Post by: Manal on May 06, 2010, 07:28:11 PM
Madhavi,

The pictures are lovely, thanks for sharing. Can not imagine how happy i am. Being around from the time Mo started the transplant made all this whole thing a special thing. Thanks for making us part of all this from the beginning.  :hugfriend

Congratulations Mo for the school, way to gooooooo sweetie

Manal
 


Title: Re: Mohanish and his transplant
Post by: Madhavi on July 09, 2010, 11:19:46 AM
Hi friends....
Was just reading Omegas post about his experience with the unrelated bone marrow transplant(yes, I hadnt read it before....!!!!)...
I just realised how fast things change....there have been so many revolutionary changes in these 3-4 years...and the way medicine changes each minute makes such a big difference in peoples lives....
I hope that not only is curative medicine moving in leaps and bounds but also preventive...because that is what counts so much in our lives, isnt it?
And I just realised that having you all with us through it each and every day made it so much easier ....!
Now I know when one hears things like, 'Things will all fall into place'...I just had to be in Guangzhou,China under Dr.Chunfu Li's treatment,  Manoj joined this forum to begin with,have an angel called Masumi come into our lives have the transplant at the correct time with the perfect support system and love that any family could ever ask for....!
I may express my gratitude a million times and yet the next time, I wish to do the same again...!!!!!
Thank you Lisa(You were a divine boon to us for sure!),Andy and all of you my friends.....for being!
Lots of love to all of you.... :hugfriend
Madhavi
PS-Mohanish is doing fine....he is waiting for school to begin next month....The last visit to the doctor brought his ciclosporin down to 10mg twice a day....which will be halved in a week or so...and stopped by the time it is time for school...His Hb remains between 11-11.5 which is expected...the rest of the counts are all within normal range.
Masumi has grown naughtier and they both are just too much for me to handle!!!! :rotfl


Title: Re: Mohanish and his transplant
Post by: Manal on July 09, 2010, 06:12:30 PM
Madhavi,

I am really so happy for you and congratulations for the school. Send a big hug for me to the little angles :hugfriend :hugfriend

manal


Title: Re: Mohanish and his transplant
Post by: Zaini on July 10, 2010, 02:38:27 PM
Kisses for little ones :kiss and a punch for you  :heehee hope we'll find time to chat soon  :hugfriend .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on July 12, 2010, 01:17:09 AM
Madhavi,

I am so glad to hear how well things are going.  I am also very glad that you are a part of our group xoxoxo

Love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on September 20, 2010, 08:29:46 AM
The last visit to the doctor brought in good news.
We need not have any more follow-ups for post BMT!
The last report shows a Hb of 11.8. The rest of the readings are all within normal limits and some approaching the same.
Ciclosporin is to be continued at 10mg od for another month.
After that we wait for 2 months before we can check for the vaccination schedule!
Another lovely news to share with lovely people.....

As for the kids, they both are enjoying kindergarten and being as naughty as they can...It is interesting to see how they are rattling away in Mandarin and I miss out on some of the vocabulary!

Lots and lots of love to all you guys.....
This world is a lot more livable because of thalpal!


Title: Re: Mohanish and his transplant
Post by: Sharmin on September 20, 2010, 07:54:47 PM
Madhavi,

I am so so so very happy for you and for our dear Mohanish.  You have gone through a lot to reach this and I wish you a
very smooth and happy road ahead.  All my love to the kids.

Love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Madhavi on September 21, 2010, 01:01:46 AM
Thank you so much,Sharmin! :hugfriend :hugfriend


Title: Re: Mohanish and his transplant
Post by: Zaini on September 21, 2010, 12:57:00 PM
Its a great  news indeed,i am so happy for you and Mo :) .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Manal on September 22, 2010, 04:06:23 PM
Madhavi

You can not imagine how happy i am. congratulations my friend,you have all gone through a lot. Wishing you, your family and our little brave fighter all the best xoxox

manal


Title: Re: Mohanish and his transplant
Post by: Dori on September 23, 2010, 10:51:21 AM
Congratulations Madhavi!
His sister were is donor, right? I heard it's out of 1/4 that a sibling is a donor. So it's unique (what you knew already). What is cyclosporin ?


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 26, 2010, 03:20:42 AM
Sorry Dori, I missed your post.....
His sister was a donor...yes the chances of getting a sibling match are quite rare in a way...!
Ciclosporin is an immunosuppresant..It helps to prevent rejection of any graft-in this case the new bone marrow...

Well, I am writing in because as of yesterday, Mohanish is off ciclosporin....! We now wait for the doctors nod to begin his re-immunization.
After that we will be planning a trip to India early 2011...Mohanish was 9 months old when I brought him here to China....!

It is a big thing for us to have him off all his medication and an important thing to share this 'event' with you all here...

It seems like time has flown....29th Oct will mark a year of the actual transplant....I will hope to write in my last post at this discussion topic on that date....

Lots and lots of love to all of you my friends............
Madhavi


Title: Re: Mohanish and his transplant
Post by: Andy Battaglia on October 26, 2010, 09:39:07 AM
Madhavi,

Congratulations! It must be such a relief to stop the drug after so long. I hope they don't pile too many immunizations at once, as the side effects can make one sick for a few days.


Title: Re: Mohanish and his transplant
Post by: Zaini on October 26, 2010, 12:28:27 PM
Hey Mads !!

Great to hear that,and when you come ti India,remember Pakistan is just a bus ride away  :wink .

Zaini.


Title: Re: Mohanish and his transplant
Post by: Sharmin on October 26, 2010, 03:06:50 PM
Madhavi,

I am so glad to hear that he is off of the drug!  You're family has been through a lot in overcoming thalassemia.  It has been quite an experience for all of us as well - and we are all so glad that our lil Mo has done so well with the transplant.  May he always be blessed with perfect health and happiness.  You have been such an incredible mom - and wonderful friend to all of us.  Much love to all of you and enjoy your trip to India!!  :hugfriend :hugfriend

Love,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Dori on October 26, 2010, 03:38:36 PM
Great news you show with us. One of best friend had a stem cell transplant 42 days ago. Because of issues, which I will not post here, they performed an awful bone marrow punction to see what's going on. The results have been moved to next friday. A few days ago I heard another friend of mine will start her bmt process in the middle of November. Both transplants are performed to treat thal major. They are 24 and 18yr old. One treated in adult department and one in child department (you can better be there).
Nevertheless, I am glad to hear he's doing well. It's such a blessing!  :hugfriend


Title: Re: Mohanish and his transplant
Post by: Manal on October 26, 2010, 05:49:45 PM
Thanks Madhavi for always sharing the news. I am so happy for you all :hugfriend
How time flies, i remember when you started this post... your family has passed through a lot and thanks God everything is more than perfect and i hope it will always be.

Much love to you all and big hug to my little sweeties xoxxo

manal


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 27, 2010, 08:00:52 PM
I realised one thing...that true and loving friends like you can give me goosebumps no matter what!
 :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend and many more....

Regarding the immunization schedule, we will have the usual schedule as such.This is the proposed schedule...I have yet to meet the immunization department doctors to confirm the same. This has been approved by Dr.Li and is as per the studies conducted in post-transplant patients...

1) Hemophilus Influenza B-November 2010 –May 2011
2) DPT/IPV-November, December 2010, January 2011
3) Hepatitis B November 2010, December 2010,April 2011
4) MMR October 2011
5) Pneumococcus October 2011

Zaini, I wish I could visit Pakistan as well...I would love to meet all you friends personally-Pakistan being the closest and good to start with!
When in India I hope to meet the local thal-societies in Mumbai atleast and attend their meetings if I can....and share my experiences....

Thank you again friends....we are where we are because of you all...your love and support!

Madhavi


Title: Re: Mohanish and his transplant
Post by: joyce on October 28, 2010, 08:34:58 AM
dear madhavi,

keep in faith and don't lose hope..as to remind my self too..
always pray for what happen next.


love,
joyce


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 29, 2010, 12:15:08 AM
Thank you Joyce....!


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 29, 2010, 01:51:45 AM
Dear friends,

Today is a special day in our lives...
Mohanish completes one year of his transplant today...

Today, we wish to share our joy and gratitude with all you friends...

We are thankful to the Almighty who blessed us with such lovely children and friends like you.

We are thankful to have this angel Masumi in our lives, who has not only been a source of love and joy but also had a divine mission to cure her brother.

Words will never be able to do justice to what we feel for our dear Dr.Chunfu Li. He has been a friend, a guide and an angel in our lives. We owe him the peaceful sleep that our family sleeps daily and the decreased hospital visits! He has not only cared for Mohanish as a patient but also blessed him in his own special way!
Also an extension of this gratitude to his entire team at Nanfang Hospital...They have done their duty, they say; but to us it was a boon and a blessing!

The whole experience that we went through was not easy in any way. Right from the monetary part, to the actual happening of the whole thing which seemed so easy on paper and in thoughts, to the support required during that period and the follow ups. It was a big decision and we did not think much about all this when we took that decision. But luckily for us, things fell into place. They did fall into place because we had the love, blessings and support of family and friends.

A special mention of our parents who have been there with us through it all through their prayers, visits to holy places, their guidance, their understanding, their efforts-physical and mental and of course their blessings. My mother was here with us personally for almost a year and helped us in each possible way and beyond her means without caring for her own health and age constraints. We know that God sent her to be with us because He personally could not do so!Thank you, Mummy!And my father and brother were virtually with us through their daily (sometimes many calls a day) phone calls...Manoj's mother,brother and sisters were also with us through their intermittent calls and messages... They did boost our confidence and patience and helped us cope with those times.

And all you friends. Some of you whom we have just known through the internet. You have shared the whole experience with us- prayed for us, cried and smiled with us, supported us with such honest and true concern... Yours have been the most selfless support-with nothing but our goodwill in mind. You have helped us by being in our lives and knowing just what to do to support us in just the right way! If we begin listing, the list would never end...but we are grateful to all of you for all your love and support...It is tough to express here how lost we would have been without you all....
We would like to make a special mention of Sudhir,Alwyn, Even and Vidya who were with us like family.They made our lives a part of their own-literally! They did not think twice when it came to lending a hand-monetarily as well...Money anyone can lend, but lending it without a second thought and with so much love is a big thing indeed...The financial debt has been cleared off long ago, but the emotional one will go with us till the very end!
Our Chinese friends- Jiejie and Najia and their family were with us in whatever way we would need them. There were no barriers of language or nationality but only bonds of love that grew even stronger....No matter how much Chinese we learnt to say our umpteen 'Xie xie's(thank-yous)they would still not suffice!
Also there were regular visits and phone calls of our friends-Kemble-Zallari,Naresh-Jahnavi,Shachi-Akshaya. Such seemingly tiny strands of support became a huge source of strength...!
Also our office staff-Maggie and Cleo who did their bit in it all!
We would  like to mention our online friends at thalpal.com. The whole thalpal family has a special role in Mohanishs life-he sure is special to have got so many aunts, uncles, brothers and sisters all at once!You all have made a huge difference with those regular posts at this thread...We have mentioned it many a times and will do so each chance given-we are really lucky to have found you all!
And all our friends in India and the world over-who were there with us by phone or emails or messages.Too many to name yet a few I do mention-Aditi, Ajitha, Girish, Joseph and Sumedh.

We thank you all as we savour this joy of life... We are happy to have wonderful people like you all in our lives to have seen us through tough times and bless us in these good ones...You have been there for us in those times, and today we take time out to feel blessed all over again as we revisit that era!
Today, we take a chance to say a prayer and thank God for all that he has given us. We count our blessings-you all!

May this kind of love and humanity keep growing...May we all be blessed...

Lots of love to you all....
Madhavi and Manoj
(and Mohanish and Masumi)



Title: Re: Mohanish and his transplant
Post by: Imran on March 13, 2012, 11:33:51 AM
dear madhavi,

best of luck.


imran


Title: Re: Mohanish and his transplant
Post by: Madhavi on July 18, 2012, 10:28:51 PM
Thank you, Imran!


Title: Re: Mohanish and his transplant
Post by: Pratik on July 20, 2012, 07:14:57 AM
How is Mohanish doing now? :)


Title: Re: Mohanish and his transplant
Post by: joyce on September 30, 2012, 10:23:54 AM
Ya.. How's he know?? please update.. :wink


Title: Re: Mohanish and his transplant
Post by: Imran on November 06, 2014, 11:52:26 PM
best of luck


Title: Re: Mohanish and his transplant
Post by: Sharmin on November 07, 2014, 10:29:21 AM
Joyce and Pratik,

I haven't heard from Madhavi in a while but I think Mohanish is doing well.  Praying for he and his blessing sister to have long and healthy lives.

Best,

Sharmin


Title: Re: Mohanish and his transplant
Post by: Lena on November 15, 2014, 01:43:30 AM
Yes, we all were part of Mohanish's worries and in a way, shared his agonies a year ago.
All the best for Mohanish and his family,
Lena


Title: Re: Mohanish and his transplant
Post by: Madhavi on October 13, 2020, 07:55:08 AM
Warm greetings to everyone at this wonderful group.
I have often questioned myself about not visiting the group again, reprimanded myself for doing that. I had too many mixed feelings about doing so. I logged in today after a very long time and realised that I had missed quite a few messages. Apologies for that!
This post, I now realise as I sit back and look into the times that have gone by, was written 11 years ago. Mohanish completes 11 years of his transplant this year, in another fortnight. He is a tall handsome 14 year old boy with a mind of his own and studies in grade 9 in Vadodara, Gujarat, India. His sister, Masumi is a pretty young woman of 12 years and studies in grade 7. Puberty has hit them both and you guys can only imagine how that leaves me to tackle them or rather not!
They are only reminded of this aspect of their lives when we mention it to them. It all seems such a distant past, even to us. But today as I sat reading it, I felt the goosebumps again, had tears in my eyes again. I realised how lucky we were that we were blessed to have angels like you, with us, praying and sending your good wishes.
I send a warm virtual hug to everyone, more than what family or friends can mean. You guys have all been truly selfless and may you all stay blessed with a lot of love, happiness and peace.
Will try and upload some of his relatively recent images for you all. (He hates the camera he says and does not want to be photographed. His selfies at social sites don't count in these!)
Lots and lots of love to all of you,
Madhavi