Discussion Forums > Thalassemia Major

Dying inside....

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marientina:
Manal has a point unless you know for sure your child has major. It is a hard decision to make, but you won't know the rate of transfusion until you start. It may not be as bad. I know everyone here has prepared you, but it is your baby and watching her get poked is a hard thing to take. My mom felt guilty that we were both born with thal minor and jaundice and had to be incubated. Till this day she feels bad that I am always sick and I am just a thal minor.

Early transfusions are important to keep development normal, but if you're not happy with her advising can you get a second opinion somewhere?

I am thinking of you. Be strong. :)

alnahrahmea:

--- Quote from: Christine27 on March 12, 2007, 08:50:39 PM ---hi to all.

it has been,what seems to be forever since ive posted on here. please know that i did not abandon you. i have started working again and been very busy.

Today we were told by lauryns hemo. that she needs to start transfusing. Her tx appt is for april 2nd. please believe me that even though she looks good, I knew something was going to go wrong at the drs appt. i was very anxious, and tense.(this was before the dr even saw her). i was paranoid and very irritable. i just knew something was not right. after the dr assessed her, he came back in and simply stated,"this is the time where we need to start talking about transfusing". My heart fell 50 ft into the ground. i was too in shock at first to cry. (i noticed my husband across the room,was trying his hardest to fight the tears from pouring out.)
Lauryns hgb fell from a 9.1 to a 8.3 in 3 weeks. her spleen is enlarged to 2 cm, and her blood pressure is lower than normal.
her coloring is ok, and her eyes are fairly white. but she is slowly showing signs of hemolysis.i dont know what to do?
i am so selfish. we have had the gift of seven months w/o transfusions, and now i am angry? why am i so shocked? did i really think this day wasnt going to come? am i in denial? is this normal? all the thal parents who read this(and any parent really for that matter),will understand when i say that  my heart is broken into a trillion pieces. the love of my life will soon begin her journey of all the things i feared most.
the dr wants us to consult with a pediatric surgeon for the port! i refused.i think of all the thals ive spoken to, who have managed w/o one. why is my baby the exception? is it that simple? not as the parent its not! then he mentioned a picc line. then he said it will really hurt lauryn if we dont "make it easier". easier for who?! the nurses or my child?!!! he said i might not have much of a choice. I felt like shaking him and saying, how bout we take YOUR kid and cut her open and put a foreign object in HER heart?!
please help me! i am so lost, and desperate for strength. i am losing all faith and i need to be strong for lauryn.
i dont know why i am being so negative and short. it is not directed to anyone in particular by any means...can you help me find the courage to accept reality, and help me with the decisions we need to make???
like the title of the post states.... I am dying inside. I dont know where to turn....

--- End quote ---

Dear Christine,

I understand your worry as a mother.  I have one little tot on the way and I am a mom with Thalassemia.  Actually oftentimes it is normal to look at things in a negative light especially if we see our loved ones suffer, but always remember that your little one will also draw courage from you.  I have seen from your child's picture that she seems to be a brave little girl. Find that strength from her and together you become pillars for each other.  Acceptance is a gift that would open all doors of hope.  You are lucky that you are in a country that all available options for treatment and management are there.  Not all people in your case have the same luck. Just stay grounded and have faith.  You have everyone in this forum for support.  :hugfriend

God bless! You and Lauryn will also be in my prayers!

Sincerely,

Lei

vic:
hi Christine
we too started the transfusion journey one year ago with our christian.  i remember being in hospital for the 6th time that year with my son and the haemotologist came in and said it's time to consider transfusions.  i cried and cried.  you are so right - even though we knew it was coming it was nice living a nice 'normal' life for a little while.  and the anger is part of realising that your child's life is about to change forever.

christine, we were amazed after christian started transfusions.  we had a new child-= energetic, not sick, running around trying to keep up with his friends.  we thought he was ok  before transfusions, he just was weak and got sick more often than most kids we'd tell ourselves but  we were wrong . we had a very sick little boy.  he needs care and managing now but with the regular transfusions he is having a happy life because he is able to 'keep up'

the needle part never gets easier.  my husband and i take turns taking him in because we hate the needle part as much as christian but when that's done we have a very special day together where it is just mum or dad and our little boy.  Andy is right even if you put a port i know here in australia they cannot take blood from it for thr cross match, so she will still have to be pricked to get her bloods done.

it's hard and will be until you embark on the journey.  facing the unknown is always scary.  then one day, unfortunately it becomes a ritual in your family's life.

good luck and we are all thinking of you.
vicky

Danielle:

--- Quote from: vic on March 15, 2007, 11:32:45 AM ---Andy is right even if you put a port i know here in australia they cannot take blood from it for thr cross match, so she will still have to be pricked to get her bloods done.

--- End quote ---

I don't know about any other places, but you can have blood drawn from a mediport in the United States.  You just have to remove the first 5 or 10 ml of blood from it first, to make sure there isn't any heparin mixed in with the specimen.  Heparin needs to be put into most mediports after it's done being used, so that no clots form in the line.  Andy was talking about a PICC line. :)

Canadian_Family:
Christine,

Tears start pouring down when I read your first post, denial is a fact and dilemma we still face. When my daughter start tranfusing for the first year we refused to accept she had thalassemia, we did not tell a soul about her situation. Things started to settle down after 18 months, but like Danielle said we did not talk about it, here is a shocker, our state of denail is so severe that except between the two of us nobody in my family, freinds or relatives knows about it. How we are keeping it secret like a holy grail. My parents visit us and stay with us they even don't know about it. We keep giving her desferal secretly when they are around.

I know there will be a day when things will come to open, at that point we have decided to refuse to discuss it further. We don't want any emotional stress on my daughter.

Please stay tight and go with the flow, my advice is don't discuss it too much, people are ignorant and they can only add stress unknowingly sympathising with you. But that's my opinion.

Regards

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