Totally depressed

Dear all

Today i received the results from Italy concerning the Bone Marrow transplant and the results where negative. no one (my husband, my daughter, me ) matches with my son. 
These days i will visit a bone marrow expert to tell what wil be the second option ( haploidentical, unrelated doner or what else?? )

Today i went to a gentic councelling who was discussing the option of having another baby through IVF and said if i need a baby with no thal and with a matched HLA . The probability of two carriers
( my husband and me) is 3 to 16 which means that every 16 embroys, only three of them are suitable. He is going to e-mail the center specialized in this in Chicago to tell me the cost of this. Of course if the cost is not affordable, this option will vanish.

The real problem was that i discovered that all that time i was fooling myself. All the previous time , i had hope that any of us will match, actually i was quiet sure that the result  will be positive. I even had cenarios of what will happen, how i will manage his school, when should we travel ........ everything.  Deep inside me i was dealing with thal as if it is common cold that will go and i will not be in this anymore.  Even when i gave support to any of the members here, i was talking as if i am not in the same shoe because, i knew that this will be temprory.  I was lying,but the problem that i belived myself.
The truth that i can not endure that me son is thal even that he is intermedia.  If it was me who has it, it won't matter at all.  The problem is not the disease it self , the problem is that my son is the one who has got it. I can not see him like that . My heart is truely aching . I know being intermedia is much lesser but it doesn't mattter to me. At the end of the day he either has a kind of deformation, or hydroxyurea with unknown side effects (long term) or at last blood transfusion.  Please i don't mean to hurt anyone, but this is the futre which i will accept more than happily if it was me. But i can not see my son's future that way. 

We all spoke about nice , very close to normal life. Actually this is what we tell to each other,but this is not true. You will get what i say when you read the posts of dear friend Sajid when he give support to others, but when he is asked how he is living with thal , he wrote a long post saying his true feeling. Remember Sajid that post.

I am speaking from a mother point of view, that is why i can not adapt to this fact. It s not talking about being brave or strong or that i am refusing GOD's will . No

I cannot '' digest'' what i am in. I am thanking GOD on what ever i had and will have, but  the big fact i discovered that i was a big liar.  My extreme will that my son will be cured , deleted the fact of life that i may have no hope.

Dear friends, i really don't need supportive words because i am very good at it and i think i should stop to give support to others because i am lying to you and before you i was lying to myself.
Sorry for repeating myself many times . I just wanted to confess what i discovered after getting the results.

I will keep posting, i will keep answering others posts. Any new member will be welcomed and calmed down until his case will be finally diagnoised, give support to others and so on. It is a visious circle and by time everybody gets used to what ever he has. 

All this is beyond my capabilities and i don't want to get used to it. I can't

Manal

Hello Manal.

This will be quite brief as I don't feel qualified to respond to you as I don't have thal or a child with thal.  I am qualified to give you a big hug better though!   :hug

Please do not despair. Perhaps in some ways thal is like a common cold... you accept that you have the cold and keep on going or take rest when you need it.  Hope is a strange thing... first you had hope that your son would be cured with BMT, but that hope has been dashed.  But hope comes back, even when it has been knocked down it gets back up. A new hope will come...like a hope that your son will manage his treatment well and live a good life,  or a hope that gene therapy might provide a cure for him and others like him in the future.

Good luck in finding your new hope.
Sally.

Manal,   
     I feel so much for you, Manal. The words coming from your heart have me crying. You have so much love for your son and that is the most important thing he will ever need. He is loved so much - that is the best thing in this world.
     I have intermedia and yes, it is definitely trying and difficult at times, but my life so far has been great. I have accomplished almost everything I have wanted to accomplish. I'm only saying this to perhaps give you some comfort and hope, although I know nothing right now will ease your pain. I just wish I was there to give you a big hug. Having thalassemia has given me strength and compassion, and I feel good about my life. I think your son will feel good about his life, too. He has the love of his family, and with that behind him, he will feel he can do anything.   
     I am so sorry that the donors did not match - that is such a terrible disappointment. I hope that something else works, and we can all hope for a genetic cure in the future. Once again, I am so sorry you have to go through this pain. You are a beautiful soul and a wonderful parent. I wish the whole group could fly to Egypt and be with you. Love to you, Jean     
 

Mrs. Manal don't be depressed you make me think what my parents have gone through


"Be optimistic!" These are the key words!!

Look on the bright side of everything.
Intermedia > Major
Hydroxyurea > Transx
and most importantly
Egypt >>> Pakistan etc

Your son has better opportunity to live a normal life than me. So don't worry a bit! More odds are with you rather than against you that his BM didn't match.

Don't make him feel different from any normal kid and enjoy life!

Take care, Peace!

Manal,

I don't think this realization will keep you down for long. BMT is not a solution for most thals and incurs many risks. It won't be long before the main thing on your mind is watching your son's development and making sure that he does all the right things, like taking daily folic acid (I'm amazed at how many thals are not religious about taking folic acid. It couldn't be any easier to comply with and is so needed in thals), keeping a low iron diet, drinking tea with meals and getting plenty of fresh air and exercise. The value of exercise may be unappreciated by many thals but regular exercise can be very helpful in maximizing oxygen efficiency in the body.

Many events in life are depressing but things have a way of "normalizing" and we are soon back to doing what we do and that is live our lives the best we can. Most parents of thals go through what you are experiencing and as hard as it is to accept, they do their best for their children. One very important thing to remember is to not be overprotective. Let your child live his life and do whatever he wants to do. Allow him to be normal just as you have been doing all along. There is no reason to let thal be a limiting factor for him.

And I would also like to comment on what Sajid has said about the problems surviving in Pakistan as a thal. It is one of the harshest countries on earth to survive in as a thal, and the fact that we have so many members from Pakistan who are surviving is a testament to the efforts of their parents in giving them the best they could. I take my hat off to the parents and patients in all countries where they are at a disadvantage. Your efforts are remarkable.    Things are beginning to change in Pakistan but so much help is needed in all areas of medicine. Your medical system in Egypt is much better and will give your son a much better chance to have a normal life.

Hi Manal.
It is sad to hear that you couldn't find a match for your son yet. but its not too bad he still has a good chance at having a good life being (Intermedia thals)There are other options and available treatment in the medical fieldto keep him comfortable and to maintain adequate standard of a reasonable life.The only thing that has you more worried is the prospect of him not having the transplant straight away.Be patient, have hope and continue with the current care.
something good will come your way, God always reward good people with good things your sons time will come for his reward too;
I will  think of you both in my prayers and my love to you.
Kathy :
.

Hello Manal,

I can understand a little what you are going through. We were in the same boat when we took my niece for HLA match up. My sister had the same feeling as you did(HLA will be a match), until we heard the results. The reality is the maximum chance of HLA match is with a sibling and that too is 25%. If the sibling does NOT match, we can try the parents which too is very rare. After my niece's HLA did NOT match with her brother's HLA, we too got my sister and brother-in-law tested (which the doctor mentioned earlier chances are quite less(1 in a 1000) that it would match - if the marriage is NOT in the family). and that did NOT match either. But, I remember till that point the HOPE was driving me as well as my sister's family. I know it is tough, but Can we try and keep this HOPE for other options??

Remember, BMT was NOT there years ago and people thought Thals cannot live more than few years. Today, there are Thals who are doing very well if they follow the optimal treatment. Thals dreamt they would have a magic pill instead of the painful insertion of needles(Desferal) and today there is Exjade and Kelfer.

As Andy mentions, BMT is NOT an option for a lot of Thals and I have heard from the doctor himself - that BMT is a very very tough option. What the body goes through, it is very tough. May be(and don't think this is just to make you feel better) there is a better treatment down the road and you son does NOT have to go through the harsh and dangerous BMT option. I have heard some patients NOT going the BMT route even after an HLA match and they being able to financially afford it because it is very risky.

I asked the doctor about the Unrelated Bone Marrow Transplant and he mentioned that is NOT being done in India currently. Here are two posts that might give you an idea of other options for you.

Cord Blood Transplant -> http://www.thalassemiapatientsandfriends.com/index.php?topic=127.0

Unrelated BMT --> http://www.thalassemiapatientsandfriends.com/index.php?topic=217.0

Keep the HOPE,
-Narendra

     Sometimes I think not knowing I had thal intermedia until I was in my 20's was maybe a blessing (I must admit I don't think this way 100% of the time). I had no limits put on me, no restrictions, and therefore, I felt like everyone else. My parents didn't have to worry because although they knew I was sickly at times, they didn't know I was different than my brothers. They treated me the same. They were always there for me when I was sick, but it wasn't made into a big deal. Children are incredibly equipped to adapt and survive. I know there are different levels of intermedia also. 
     Just saying this for extra info. - I know it can't help the pain and despair you feel as a parent, Manal. Just trying to help. Jean

Dear friends

No matter i say, can't explain how gratful i am to you all.  Your words made me feel that i am balanced again.

Sally, thanks for the advice and yes, this is what i will do. try to find hope and work for it. Thank you for being that caring.

Jean, i don't know why, everytime i read what you wrote me i cry more and more. your words touches me deep in my heart.  You are so loving, caring, sesitive person. You are the heart of this group. God bless you 

Sajid, thanks a lot for the encourgement. I will try to take it that way, but i cann't promise

Andy, thanks alot. yes what you said is right. My words were so emotional and aggressive, but your words put me back on the right track.  You are right about the concept of ''normalizing'' though when i first read it, i wasn't convienced.  Concerning Egypt And Pakistan, believe me there is no difference.  As Jean is the heart of the group, you are is brain. Thanks.

Kathy, you are so right in defining my worries. It is true, i am not patient enough. Kathy, when i read our posts to me the first time, i was just reading and without comprehension.  Later when i read them more and more, i became more comfortable especially that you picked up things that are very true. I will have hope for other options as you said and most of all i will be patient.  I am so optimistic with your words '' something good will come your way''.  Hope it is true Kathy


Narendra, yes you are right. When you want something badly, your mind neglects the risks and you only see the bright side of it.  Hope you are right and comes a better treatmeant.  Cann't imagine when this day will come. Did your sister ever thought about the haploidentical transplant before?


Once more, thank you so much.  All your posts weren't only supportive but made me realize very important things.   I will be more patient and will have hope in other options and keep searching..
Try my best to  overcome my pain and despair by believing that God will give me all the best.

I will keep you posted as tomorrow is my appointment with the doctor specialized in transplant who will give me his last opinion. 

Knowing people like you is a gift from God

Manal






 

Dear Manal,

I had an epifany (sp?) today, that in a wierd way, gave me comfort. Maybe it will help you too,with your dilemma.
You see, Lauryn is doing so well at this moment, that I can't imagine seeing her need a transfusion. If the Dr. tells us her hgb is low on Nov.22. and she needs a tx, I wont believe it.... I would be shocked b/c she is showing no signs of "failing". BUT... if I saw her fussy, listless and NOT doing well, I would almost be eager to make her well, and I can say I'd be RELIEVED that she'd be getting tx'd. The transfusion would IMPROVE her quality of life, and SHE WOULD FEEL SO MUCH BETTER. (In turn,it would make me feel better).
My point is, as scary as it is, for us to see them go through this, we have to think how much better they will feel afterwards. I know for you, Ahmad getting transfused is the last resort,but if it comes down to that,just think how bad his body needs it, AND HOW MUCH BETTER HE WOULD LOOK AND FEEL.
Ya know,its kind of funny,I've heard from numerous people that it's almost better to have major than intermedia. With majors, you know what to expect. It's basically cut and dry.Transfusions and chelation.With intermedias,they are in limbo. You second guess,what treatment is best,what meds will work,what wont,they prob. have to tx.and chelate eventually,iron absorbtion via gut etc.... There is so much to consider. I am not saying that tx. is the best thing at this time, and I'm not saying it isnt. Im just saying WHATEVER works to make Ahmads life the best it can be, is worth everything.
I hope I'm conveying what I feel correctly. It kind of makes things more bearable for me.

 :hug

Christine

Dear Manal,

I cannot say I know "exactly" what you are going through because although I have thal major, I am not a parent to a thal.  To know what a parent goes through one has only to talk to my dad , who I can say lies at the extreme end on the continuum when neither awareness nor treatment for thal was really optimistic. I can only imagine what my parents have gone through, but suffice it to say not one person gave them a hopeful word about me surviving.  Yet I am so glad that they were unwilling to give  up.

I do know, that I often do feel I cannot lie or pretend and just show the thals and their parents only some rosy positive picture. Reality of the situation cannot be denied. Our scope lies in the "attitude" with which we face problems and crisis ( lifelong ones too) and to take it as a challenge. The way my parents did 

On a more proactive level and of  utmost importance, is the quality of care and treatment thals receive from childhood onwards. Good and proper treatment can keep you feeling " on top of the world". On the other hand, Hb getting low can make one feel lethargic, apathetic or depressed. Yes, I never knew this personally, but anemia can make you feel "low".   

Manal, I will only say that    -  to us,  the thal children, it makes a huge difference how the parents face it, and how strong and cheerful they remain. The way they face it, sets an example for us and in turn  bolsters our own confidence and courage. This is why I say, how ever you may be feeling inside,  please keep smiling and always show your child that nothing is different and nothing is wrong.

Through my own experience I know that 'the parents' and how they "take on the challenge of dealing with thal", can and does make a huge difference in the morale of the child.  Despite the worst calamities we may be facing, it makes us walk where angels fear to tread with the biggest smiles on our face ! 

Regards,
Shilpa.

Dear Christine

Yes i got your point and you are totally right.  Our ultimate wish is to see our children in their best conditions.  Let's hope Lauyrn and Ahmad will keep  doing well 
Thanks  :hug

Dear Shilpa

 

Manal, I will only say that    -  to us,  the thal children, it makes a huge difference how the parents face it, and how strong and cheerful they remain. The way they face it, sets an example for us and in turn  bolsters our own confidence and courage. This is why I say, how ever you may be feeling inside,  please keep smiling and always show your child that nothing is different and nothing is wrong.

Through my own experience I know that 'the parents' and how they "take on the challenge of dealing with thal", can and does make a huge difference in the morale of the child. 

These words had great impact on me. You are right Shipla, I always talk about how i feel. Now you made me realize that there is someone's else feelings which is my son and that it should be considered and managed.
Thanks  :hug

Manal

Shilpa has survived under very tough conditions in terms of treatment, as a child and adolescent in India. There was no desferal when the older thals were young and those who have survived have had to be strong themselves, but most importantly, they had parents that would do everything they could for their children.

When Shilpa was first diagnosed in India her parents were told there was no hope. Her father refused to accept that. He did everything he could to learn about thal and what the most advanced treatments were at that time. He is the reason Shilpa has survived to outlive her thal peers. When I visited India, I had the pleasure of being hosted by Shilpa's family during most of my visit. Her parents are wonderful, gracious people and I felt honored to meet her father, Ramesh, who has given so much of himself so that Shilpa could still be with us today. I thank him greatly, as Shilpa has been an inspiration to me since shortly after I joined this group, and we have had the opportunity to work together both online and in person, and have developed a special friendship and a very complementary working relationship. Shilpa deserves equal credit with Lisa for my involvement in this group and without her father's tremendous efforts over the years this would never have happened. Thank you Ramesh and thank you Shilpa for everything you've contributed to involving me in the best thing I have done in my life.

Why have I brought this up? Because I want to challenge every single parent to be a "Ramesh" themselves and have the strength and the will to do everything you can for your child. If Shilpa has survived through an age when treatment wasn't even considered an option in India, what more can you do for your children with the tools that are available today for treating thalassemia? Yes, at times it all seems bleak, but you have to believe that you can make a difference. Learn to never take no as an answer. Don't let anyone tell you that you can't. Know that with the proper treatment, that your child will outlive you. And no matter what you feel, always tell your children that you believe in them and their ability to live a normal life and do everything you can to make that happen. Give them every opportunity and allow them every chance to succeed and have a real life. How do I know you can do this? I have met many parents of thals and so many of them are "Ramesh's" in their own ways.

I have had the experience recently of watching the growth of several parents in our group. Unfortunately, we often meet parents who are new to thal and we all wish there was some easy way to help them through the initial shock and dismay of realizing what their child is up against. It's never easy on the parents at first, no matter how well they manage later on. But what has struck me is how these parents have all risen to the challenge regardless of how difficult and at times, hopeless, it all seems. I don't know if any of them thought they were strong enough when they first found out, but they have all demonstrated great strength in coming to terms and dealing with the reality of raising a thal child. I want to tell you all that from what I have seen in just a short time in terms of growth is so encouraging because I know all these kids have parents who are going to go that extra mile for their child. They are going to accept what they have to and they are going to have the strength and will to always go forward and do everything this challenge asks of them. I hope you all know how strong you are. You will make the difference in your child's life.

Dear All,

This particular bunch of posts took me through a rollercoaster of several emotions...fear, anxiety, worry, uncertainty, pain, helplessness etc ...etc...to hope, faith, love , care and a promise...As a parent, it is very very difficult to keep a bold, straight face and meet day to day challenges, esp..when its your child who is in pain.....its easier said than done...but we will do our best...and I am glad I came across this site and all of you...I am trully grateful....for all the information that I am receiving and the unconditional support...

Thanks
Roopa

Great post Andy!
 
It is tough to be the parent of a child with Thal because you wish that you could take away all of the hurts and problems.  But, these children are SO precious!  Here in the US we have such good health options and we could probably choose a cord donor BMT for our daughter.  However, the risk for me is just too much.  I cannot bear the thought of losing my little angel.  I admire those people who have the courage to do BMT, but for us it is not an option.

I do have fears about our daughters' futures, but more than anything I just want to be the best parent to both of them that I can.  Being an adoptive parent adds another twist.  When we brought our daughter home from China we prayed that the diagnosis was wrong and the doctors here in the US actually told us she was Alpha Thal minor at one point.  Then she became sick, very sick.  So my hopes were dashed, but I didn't have time to worry about my own feelings because I knew that she needed me to be her mommy and take care of her.  From that day forward I vowed to learn everything that I could about her disease and what I need to be doing for her.  Now, we are adopting another little girl with Beta Thal major because we know that we can manage.

All that being said, I think that every parent of a child with Thal has to allow himself/herself a bit of time to grieve.  We have to give ourselves permission to grieve the loss of the childhood and adulthood that we had so wished for our child.  I cried so hard in the hospital the night our daughter was correctly diagnosed with Beta major.  After that I picked myself up, brushed off and started over!

I hug my daughter close every day and thank God for her because she is special.  I can't wait to bring our new daughter home and start taking care of her too.

Take care all!