Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: samyuktha on August 27, 2015, 12:32:49 PM
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Dear Andy brother & Friends,
Hope everybody is doing fine.Sorry for the long gap in posting in our forum and not able to reply to a few messages.I was held up with arranging funds for Samyuktha's BMT.Everything hasbeen arranged and the good news is that preparation for our Samyu' s BMT has already started.she was admitted on 20 th August in Immuno ICU.Her chemotherapy by IV line started on 22nd of August.Today her chemotherapy sessions got over.From tomorrow she will be having ATG (Immuno Suppressant) for 3 days since she is going to have unrelated Transplant.On 31st of August,coming Monday, she will be having her transplant.
Friends,keep her in your prayers.
I will update you when ever I get free time.
Take care ,
Regards
Viji
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Great News, Best of Luck. Please keep us posted.
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Sending prayers for a good outcome for your child.
Sharmin
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Prayers and best wishes for the little one and all family members.
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Best of luck dear Samyu.. :heartpink :heartpink :heartpink
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Best of Luck dear
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Dear friends,
Thank you all for your wishes and prayers for samyuktha.Her BMT transfusion went smoothly on 31 st August.she is fine except for episodes of loose motions which the doctors say is normal after chemotherapy.This can continue for another few days and will subside.Samyu should be able to show cell count in 7 to 10 days post BMT.Sept 9 th is her birthday and I pray the almighty that her birthday gift is good cell count and her complete cure with quick recovery.
When I get free time I will update you.
Regards,
Viji.
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Good luck to your son samyuktha and happy birthday!
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Prayers for a good outcome for Samyuktha!
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Happy Birthday to your child. Praying that all is well!
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HAPPY BIRTHDAY DEAR SAMYU!!!!!
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How is Samyukata doing. Hope by now she would have started showing donor's cell count in the peripheral blood. Its the neutrophil that engrafts first. The average time for neutrophil engraftment is 14 - 20 days in BMT. Has the chimerism test been done? We all are anxious to know the progress. Our prayers and blessings are with you and the child.
Best wishes from all of us here.
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Dear Friends and Andy brother,
Thank you all for your prayers and wishes for my daughter Samyuktha's complete cure.Her birthday went fine in BMT unit on 9 the September.She cut her Birthday cake and got a doll as gift.she is happy.
As for her clinical updates;
Today is day +14 after BMT.
They have taken a blood test today morning to confirm that donor cells are only present in her body.Prayers to God that everything happens good with her.
Today her cell count is as below;
TC: 6200
HB:10.3
PH:16000
PCV:30
Keep her in your prayers.
Thank you,
Regards,
Viji
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All my prayers for samyuktha.
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Great news!. what's her MCV. Please keep us posted about her chimerism report as well. Really happy for Samyukta.
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This is such good news! Hoping for ongoing improvement in her health!
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Hi friends,
Today we got samyuktha's donor chemerism report.
Its 100% donor cells.
Thanks to all your prayers and best wishes.
Please continue to keep samyuktha in your prayers.
God is great .Gods blessings brought us so far.
Take care,
Regards ,
Viji
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Good luck!The cure of samyuktha gives us joy as if it was our children.
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My prayers for Samyuktha....God Bless!
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Hi, can you inform where you did bmt, it was matched unrelated or haploidentical.
How's the kid now... my prayers
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Dear Friends,
Samyuktha has completed 100 days post BMT.She is doing fine by God's blessings and all your well wishes.Her counts are fine except for platelets which has come down to 70,000.Her Doctor said not to worry and it will take time for the cells to settle.She is on regular diet sans spice especially pepper.Even honey is prohibited .Thet were planning to remove her central vein line on 9th December but because her platelet is less then 1,00,000 her Doctor has postponed libe removal .Actually her platelets reduced from 96,000 to 70,000.Is this common for post BMT patients to have fluctuations in platelets ?
She is on below medications;
Pangraf : 0.5 mg - 0 - 0.25mg
Zovirax 400mg : 1-1-1
Pendits 400mg :1-0-1
Omnacortil 5mg : 1-1-1
Z&D : 0-1-0
Verz :100mg -0- 50mg
Cellcept 250mg : 1-0-1
Septran P : sat&Sun (2-0-2)
Hepatinic syrup :5ml-0-5ml
Calcimax syrup:5ml-5ml-5ml
We have done her 4 th Donor chemirism test on 8th December.Result yet to come.Hoping the best for all the Thalassemia children.
GOD BLESS YOU ALL.
Take care,
Regards,
Viji
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Viji,
That is such wonderful news!! I wish Samyuktha ongoing progress and good health. My understanding is that their can be variation in platelet levels, but I do not know a lot about BMT. I hope that the platelet issue resolves soon too.
Best,
Sharmin
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Such a wonderful news! With god's blessings may Samyuktha gets stronger and healthier. sorry, I do not know much about BMT. Hopefully other Thalpal's will be able to answer your question. I am just happy to know Samyuktha's wonderful progress.
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Mcv and wbc are the two most critical indicators post bmt. Wbc formation is the first sign of engraftment and mcv indicates the size of rbc formation. For non thals mcv value ranfes between 80 -100. After bmt mcv keeps rising till it reaches 100 fl. And thereafter stabilises anywhere between 80 to 100 fl range. Of the three types of cells wbc,rbc snd platelets, platelets are the slowest to develop in the body. I dont think there is anything to worry as long as mcv is in the range of 80 to 100 fl and wbc is above 4k.
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Dear Friends and Himanshu,
Hope you all are doing fine.Today samyuktha had dressing at the hospital.She still has the central port near her right chest.The doctor will decide on removing the line once her platelet count increases to 1,00,000.
We did CBC for Samyuktha today.The Reports are as below; She is 106 days post BMT today.
WBC : 8.4 ( last week it was 10,900)
HB : 13.9 (Last week also it was 13.9)
Platelets : 1,09,000 ( Last time it was 70,000)
So platelets have increased but WBC dropped a bit with a stable HB.
Hope everything is fine as of now.Got a little anxious.Next week we have OP with her Hematologist and we will do one more CBC and Tacrolymus test before she decides on Line removal for Samyuktha.
Please continue to keep Samyuktha in your prayers and thoughts.Thank you all for always being there to advice me and encourage me.
Take care all of you,
Regards,
Viji
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Dear Friends,
Wish you all a very happy and healthy New Year 2016.
On December 25 th samyuktha had headache,vomiting and loose stools that were watery and greenish.She was admitted in the hospital for a day.They took CT scan and the report was normal.They took CBC,SGPT,CREATININE<MAGNESIUM tests and all report were normal.
She had developed GRADE 1 GVHD of the GUT.With steroids and Antibiotics by IV ,her condition became better and we got discharged from Hospital.
Her medicines were altered,Instead of CELLCEPT 250mg ,BUDEZ CR3mg is prescribed.Instead of Prednisolone 5mg , MEDROL 8mg and 4mg is prescribed.
She is fine as of now but is complaining of weak calf muscles and her Doctor said its because of low Magnesium and we can give a correction by IV line.she has also developed BP for which ENVAS 2.5 mg is prescribed.
BMT is the only cure for Thalassemia but the Post BMT issues are more tedious than monthly transfusions.I pray to GOD to help us to get through this phase without further issues and problems.May God be with us all.'
Friends,Keep her in your prayers.we have completed 124 days post BMT.All because of GOD's grace and good wishes of kind people like you all.Please contione to pray for our dear Samyuktha.
Thank you all.
God Bless All Thalassemia children and patients with a positive cure.
Regards,
Viji
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BMT is the only cure for Thalassemia but the Post BMT issues are more tedious than monthly transfusions.
Little angel like samyuktha how they are sufferings !! May Allah help all of them and keep well and good health..
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It definitely sounds like loss of magnesium.
Stay strong. Studies of patients post BMT have shown they have a significantly better quality of life than patients under normal transfusion/ chelation regimens. It takes time to get past all the initial issues, but they do pass.
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Sounds like, while there have been a few bumps in the road, our little one is one her way to recovery and a healthy life. This difficult time will pass and her quality of life will improve greatly - you are still within the initial stages.
Keeping your family in my prayers,
Sharmin
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After so much you and little one gone through, this will pass as well. It is road to recovery with few bumps.
In pray.
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Dear Andy Brother and Friends,
Thank you all for your sincere prayers and positive words of encouragement.Without support from you guys we would not have come this far.
Samyuktha still has issues with her calf muscle pain.We were asked to consult a Paediatric orthopaedic Doctor yesterday.They took X-Ray of her leg and ankle joints and said that everything is fine.The ortho Doctor concluded that while Steroids do the good thing for the Host by fighting the Donor T-cells,it also causes significant issues to the Bones or muscles.Samyuktha has loss of calf muscle and weakness in legs.She walks like a toddler and that really pains me.But I am encouraging her to walk and making her do simple leg exercises to strengthen her muscles.She had issues with Heart burn and swallowing issues.KALONJI came to my rescue.I boiled few kalonji seeds,Yellow Mustard and Cumin seeds in water and allowed it to warm.Since she can take only boiled and cooked food I did this.I drained the spices and made her drink half cup water.Thank God,her swallowing improved and her heartburn lessened.She feels hungry because of the steroid MEDROL(20mg/day) but is hardly able to eat much because of tummy issue.
As you all said,even this will pass.God is Great.You guys are the best gift that God showed me when I had felt devasted after Samyuktha was diagnosed with Thalassemia 8 yrs back and I didnt know what the heck was that and how to cope with it.All your timely advises brought us this far.Please continue to keep Samyuktha in your prayers.
Tomorrow we have appointment with her BMT Doctor.Hope she will either reduce the Steroid dose or prescribe some medication to ease her tummy issues and leg weakness and pain.
Take care all of you.Love you all for always being there as a guiding light.
Regards,
Viji
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I would imagine that magnesium deficiency is part of the problem. If the doctors agree that it can be done at this point in time. a magnesium supplement should be given, along with vitamin D.
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Dear Viji,
I can imagine how difficult this stage is for you as a parent. It's hard enough for parents when children have a cold or fever - thalassemia and a bone marrow transplant are very frightening for a parent. These situations take so much for us to get through - you and your child have been through a lot - and at present you are still braving this difficult time. I have no doubt that things will be good soon - but in the meantime we are all here for you. I hope your child will be strong and healthy very soon.
Best wishes and sending your family strength and prayers,
Sharmin
:grouphug
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Thank you for the kind words Sharmin.
Dear Andy brother,
We had appointment with Samyuktha's BMT Doctor today.She said clearly that she is not at all worried about Samyu's leg pain
as it is anticipated with the use of Medrol.She said she is more focused on controlling her GVHD.She said Samyuktha can have all normal diet.No restrictions.Regarding her BP issue, 2 times ENVAS 2.5 mg is prescribed and we are asked to monitor her BP 3 times preferably.If BP is > 100 then medicine will be upgraded.For children SYS BP in the range 90-100 is fine.
The doctor also mentioned that since samyuktha was a Thalassemia patient before,leg bones will be weak.Natural calcium food is the best solution.Samyu is already taking Calcimax syrup 5ml that includes Magnesium and Zinc for 3 times and Z&D tablet once everyday.Already magnesium correction was given for 2 days last week.So her doctor didn't emphasize on Magnesium correction.
Samyu has Tremors (shaky hands),leg pain,lack of sleep because of BP all because of Steroids.With the blessings of the almighty and good wishes of kind people like you,samyu will come out in flying colours in her BMT Exam.Please keep her in your prayers and thoughts.
Thank you all,
Regards,
Viji
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BMT greatly depletes all nutrients. Once a normal diet is allowed, replacement of nutrients is very important.
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Hello Viji,
Any updates on Samyuktha's recovery? I hope she is recovering in leaps and bounds.
Best,
Sharmin
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Viji,
My prayers for Samyuktha's speedy recovery.
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May god bless her and wish for her speedy recovery !!
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I hope things are going well for Samyuktha.
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Dear Friends,
Sorry for the late reply.Samyu had couple of admissions into hospital due to GUT GVHD in the month of December.Samyuktha is getting better day by day.In January,She had calf muscle wastage and was unable to walk more than a few steps and cried of pain.She also had High BP because of which she had lost sensorium(Memory) and was in a confused state of mind-All because of heavy dosage of Steroid medications that got accumulated in her body.With sheer will power she is fighting all odds and getting back to health.
She is on Immunosuppressant and Steroids with a few antibacterial and vitamin supplements.Steroids keep her hungry most of the time due to which she keeps asking for food.She has a moon face with big chubby cheeks which are temporary side effects of Steroids.She has mild UTI which is caused by Enterococcus faecalis.Doctor said we will try with oral medicine SEPTRAN P to bring it under control and if she still feels uncomfortable they will plan an alternative.Last month she had issue with E.COLI bacteria and was admitted for fever issues .Antibiotics by IV line was administered for a week and we got discharged.Praying the almighty that she should not have further health reasons for admission into hospital since she is hating the hospital atmosphere.Poor kid,she has fought bravely during BMT and post BMT issues and deserves a healthy and happy long life hereon.
Her Doctor has given the green signal that she can eat all cooked foods from vegetarian to meat.Can you suggest healthy foods recommended for post BMT kids that are healthy and wont add extra weight?
Please keep Samyuktha in your prayers.She has undergone so much physical pain and mental trauma.She deserves a quality life after her battle against THALASSEMIA with BMT.
Regards,
VIJI
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Dear Viji,
Samyu has overcome so much. As always, I will continue to keep her in my prayers. Thank you for sharing, as you have been in our thoughts. I hope that her recovery is smooth now. I'm sure that the long and healthy life you all have fought hard for is ahead.
Sharmin
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I pray for a long, healthy, happy life for her. Please wrap your Angel with big hugs and kisses from all members.
:heartred
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Dear Friends,
Especially Sharmin and Emby,It brought tears of happiness and gratitude in my eyes when you mentioned about Samyuktha having a healthy and happy long life ahead.My heartfelt thanks for such a kind blessing for my daughter from you guys.All of you are in my thoughts and prayers.Her 6 Donor Chemirism result was 100% Donor cells by God's grace.
Her recent POST BMT VIRAL MONITORING TESTS showed no signs of VIRAL INFECTIONS.
She is presently having issues with Bacterial infection in Urinary Tract and Doctor said we will give oral Antibiotic and then see if she needs another antibiotic course.
Her CBC values 3 days back were;
platelets : 222000
Lymphocytes : 10
PCV :39
Neutrophils :80
Hemoglobin : 12.9
WBC :12600
CYCLOSPORINE LEVEL : 118.7
CREATININE : 0.3mg/dL
REGARDS,
VIJI
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Thank you for that update, I am so glad that the bmt is successful. God bless her with good health.
:hugfriend
Sharmin
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Overall, she has done very well. What remains is typical after a BMT. Her white cells will slowly recover, as will her immune system.
I am very happy for you. Her bone marrow is working very well and she should fully recover as time passes.
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Dear Andy Brother and Friends,
Thank you all for the guidance and support and Prayers for Samyuktha.
I HAVE A DOUBT TO ASK ANDY BROTHER.WHEN IS THE BEST TIME TO SEND SAMYUKTHA TO SCHOOL?
Doctor said she can start schooling from coming JUNE which is only 10 months post BMT.
Should I give one more year for her to rest and keep away from School with so many children.I am worried about her IMMUNITY.
Please ADVICE.
Thank you,
Regards,
VIJI
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Given the Indian conditions, surroundings and sense of hygiene chances of catching infection is high which should be avoided as much as possible. You should start with giving controlled exposure and slowly increase the exposure over a period of time. Should wait for at least 16 - 18 month before you let her move freely around or start sending to school.
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Viji,
The son of one of our members had a successful BMT a few years back. I will ask her how long they waited to send their child back to school. I do agree with Himanshu that it is best to protect her as long as possible, and then begin exposing her slowly.
Sharmin
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Dear Friends,
Especially Himanshu and Sharmin.I had the same feeling but since her Doctor was very particular that she may be sent to school 10 months post BMT,I was confused.
Now I have a clarity.Moreover Samyuktha's school Principal is not so large hearted.When I approached him with the Medical leave letter from the Hematologist,He blankly said,he cannot promote her to the next grade for lack of attendance.Whether BMT or any Illness, attendence is compulsory and that Samyu should take her final exams which starts on 26th of this month.I felt his attitude is totally insane and that of a SADIST.
Inspite of explaining him about all the health issues that Samyu faced during and Post BMT ,he seemed least bothered about the Child's psychology.I decided that I dont want to send Samyu to such a school that has a stone hearted Principal.This is the problem with some of the Indian schools.They say they are giving Quality Education but at the cost of the students health and they are shameless to put tremendous pressure on the Students.I pity our Indian children...exposed to Stress and Strain from a tender age of 4 on the grounds of Education and carrying loads of Books in their backpack that would weigh minimum 3 kg.
Any how,I am planning to find a good tutor who can come home and help her keep up to date with her subjects and find a music teacher who can train her in vocal singing.Samyu is a talented singer.She deserves a quality life with nil stress after all that she underwent before.
Thank you for the advice and guidance.
Take care,
Regards,
Viji
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Is it the attendance or the fee? :biggrin :huh.
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You should not send her anywhere that she is exposed to many people until her white cells are normalized and she is in no danger when she is exposed to the type of minor illnesses she will encounter in school.
I have heard so many stories about sadistic teachers and administrators in Indian schools. It's sad that people can be so petty and have so little empathy for others.
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Dear Andy Brother,
You are absolutely right about some Indian Schools and Sadistic Management heads.Cruel are their thoughts and actions that we shudder from sending our children to their institutions but in a country with a bulging population,its very hard to get admission to schools with value education and Humanity approach.We must have some kind of recommendation in order to get into worthy schools.Thats the fate of Indian children.
Himanshu ,Attendence as well as writing the exams is mandatory for him.Fees has been already paid in bulk in the starting of Academic year.
Thank you,
Regards,
Viji
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Viji,
very happy to see progress in Samyu's health after BMT. Wishing her a happy, healthy life ahead....May all her dreams come true.
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Dear Viji
Great to hear that samyuktha is doing fine. kindly confirm the hospital and doctor name where BMT is done.
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Samyukta's transplant was done in Apollo Chennai under Dr. Revathi Raj.
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Dear Viji
Thanks for the reply.
If possible please share your mobile no. so that i can speak to u regarding my son.
My son is 11 yrs old and getting BT every 18 days.
I am based in Bhopal Madhya Pradesh
Pl also confirm that samyuktha' BMT is done with 100% match donar.
Regards
Ashish Dua
09827055088
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Dear Viji,
I am so happy to see that Samyutha is now on a victory lap, free from thalassemia!! Will continue to keep praying for her speedy recovery.
I hope one day I could say same of my daughter...
Best regards
R
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Hey,
Congratulations first of all. Someone whom I knew locally kept their son isolated post BMT for an year. They made him take a drop for one year and then began resuming his schooling. He is doing great now. It's over 4 years now that he's done with BMT.
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Dear Friends,
Hope you all are doing fine.Today samyuktha is 236 days post BMT.She is happily playing with her brother since he is available at home as summer vacation has started.Sometimes samyu has mild cough otherwise she is doing fine.The summer is at its peak in almost all parts of India.We have our next appointment with samyu's doctor on 13th May.
Samyuktha gave her exams and she is promoted to 5th grade.Thanks to God and her will power.
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So happy to hear that she is doing well and progressing towards normal health.
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May Allah bless her mountains of blessings in life.
Aameen.
❤
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That's such great news. Thanks for sharing. Wishing her continued good health.
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So happy for the progress... :heartpink :love :love
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I read and cried along with this beautiful girl and her wonderful mom ! You are the best ! Your story taught me to fly mentally . thank You , dear ! the health of your whole family .
:hugfriend
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Hi Dear Friends,
With immense gratitude to GOD and heart felt thanks to many kind people who came forward to help us and prayed for our Samyuktha,I would like to share my happiness that today our Samyuktha is completing 365 days post BMT.It has not been an easy path of travel for us since her BMT.There has had been a lot of barriers and it had mostly been a rough ride for us.But with the grace of almighty and good will of all you kind friends,we were able to get through and come this far.
Thank you all for your kind words for Samyuktha and keeping her in your prayers.
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that is great news!
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God bless her. Great news
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Great to read this news!
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Dear Andy Brother and friends,
Thank you all for your kind support and suggestions in my days of dilemma and plight.You all mean more than brothers and sisters to me.We have reached till this far only because of God's blessings and guidance and help from many kind people.You all are there in my prayers by default and I request you to kindly continue to keep Samyuktha in your prayers.
We took a picture of Samyuktha with her Doctor,Dr.Revathi Raj last Friday.I have tried to upload the image.
Thank you for coming into our lives as God sent angels.
Regards,
VIJI
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Great... God Bless Her
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God bless, She looks well. Thank you for sharing. I wish her the best of health and many more smiles :)
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Love that smile.
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Alhamdulillah .. :)
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Dear Andy brother and friends,
Hope you all are doing fine.Thank you all for the kind words and best wishes for Samyuktha.We had the golden opportunity to meet Samyuktha's Donor uncle on October 1st.He was very kind and soft spoken.It was an emotional as well as happy moment for all of us.I thank the almighty for guiding us and the many kind hearts for rendering their support and praying for her complete cure.
We took a picture of Samyuktha with her Donor uncle and I am happy to share with you all.
Thank you all for being there to guide and comfort me during my hrs of need.
My best wishes to all of you.
Regards,
viji
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I am so happy for your family. It's great to see the donor!
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Great to see Samyuktha looking so well and happy. My salute to her donor uncle. Looking forward to hearing about all of your milestones in the future.
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Good to post a picture of the donor. It will inspire many to come forward and register themselves in the bone marrow registry.
Regards,
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Dear Friends,Brothers and sisters,
Hope you all are doing well.We are doing fine by God's blessings and good wishes of kind people like you.Sorry for the long gaps in posting messages.Samyuktha is doing fine.
Dear Himanshu brother,Thank you for your wishes and kind words.
With immense pleasure and gratitude I would like to share with you that our Samyuktha is completing 2 years post Bone Marrow Transplant.
This was possible with the almightys grace ,your goodwill and above all your sincere prayers for her complete cure.
Thank you all for coming into our lives as God Sent angels.I seek your good wishes and prayers for our Samyuktha to reach greater heights in life and grow up as a sensible,successful and kind hearted person and live a long life of good health and happiness.
GOD BLESS YOU ALL.