Dying inside....

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....

Hi Christine,

I know what you are feeling.  This is a difficult time without having anyone pressure you to do something you are uncomfortable with.  Our dr. encouraged us to not use a port etc.  Our son fussed in the early years while getting his IV, but after the age of 2 he was fine.

I know that this is not what you wanted.  To some extent us parents, even when we know that certain things are inevitable, we wish that miraculously things will be different in our children's case.  I just want you to know that I know how you feel and I hope that you feel better soon.  Your daughter will be fine, I promise.  I hope and pray that there will be a cure soon for all of our kids.  In the meantime, take care of your little one and yourself.  Our miracle will come.

Sharmin

Christine, I wish I knew what to say to make things easier.  My parents are still in denial until this day, and I'm 30 years old.  My mother is always crying about my illness and constantly worrying about me, but then she also blocks a lot of stuff.  My father is completely in denial.  He doesn't talk about it, never sat there with me when I was getting transfused, except for briefly when I was little.  He still refuses to believe that I am sick. I don't think my mom was able to block everything like my dad because she was always the one by my side through everything, and still is.    

I don't think it ever really goes away or gets better for a parent.  What you have to keep saying to yourself is that there is nothing you can do about Lauryn having Thalassemia and it's not your fault. It's not like you wanted to give it to her. All you need to do now is love her, support her, and give her all the care that she needs.  If she gets her transfusions and does what she has to, she will live a long life.  Just keep in mind that these transfusions are going to keep her here with you.  You had given birth to her for a reason.  Lauryn is supposed to be here.  I know that it's going to be hard watching her go through all this, but it's going to help her.  You guys will be ok.  

We are always here if you need to talk, vent, or whatever you need.  We know what you are dealing with in some way, shape or form.  It's perfectly normal for a parent to be in denial.  It's a coping mechanism.  

Even though the port would lessen the amount of needle sticks, I don't think it's necessary.  It has the potential to cause more worries than you already have, and it's not worth dealing with.  You have to worry about infections, clots, heart issues from the catheter being very close to it.  I just don't think it's worth it.     That's only opinion, though.

Please stay strong.  Lauryn needs her mama here with her, and needs you to be a fighter along with her.   :hug

Hi Christine,

DO not feel sad. I know very well what you are going through right now ... we were at this juncture five months back ... in September, and our baby was only 2 months old at that time.

Over the last 5 months she has had a number of transfusions ..... initially it was once every two weeks and then once every three weeks and now, hopefully she is stabilizing at transfusions once every four weeks. Every time she goes in for the transfusion, it breaks our heart. But we steel ourselves with the thought that it is for her own well being. So, for Lauryn, both you and your husband have to be strong. Take it one day at a time and once you go through the first transfusion, I am sure you will be able to handle the future transfusions as a much stronger person that what you are now.

As regards the requirement of port, my daughter did not have to get one till now. I would like to thank the nurse at Children's Boston for that. He takes extreme care when he is inserting the IV in order to minimize the pain that our daughter may have to endure.

I may have mentioned it one of my earlier posts, make sure that the nurse who is inserting the IV takes all her time to locate Lauryn's vein and does not rush the job. Also, ask her to warm up the area where she is planning to insert the IV. It seems it helps in increasing the blood flow in that area, which in turn makes it easy to access the veins to insert the IV. Also, make sure that Lauryn is well hydrated the morning of the transfusion as that too helps to make the veins easily accessible.

I may not be able to alleviate all your concerns and your apprehensions about the impending transfusion, but I will surely take the time to share my experiences and thoughts with you. Please let me know if you need to know anything else and if I know I will surely try to help.

Love to Lauryn ...

Take care and be strong.

Bostonian

  Oh, Christine, sweetie...I know its hard to have a little one who is sick - albeit not thal major - but seeing them stuck with IVs and blood sticks and all that stuff is really heartbreaking.  It does get easier, tho...with time.  Like many people have said, with age comes patience and acceptance, with some parents...but mostly the patient.  It got easier for me with age - all the blood draws, etc.  I hope you find solace that because my Mom was with me the entire way, it made it so much easier, as I am sure you will with Lauryn.  God bless you and yours...

Courtenay

because my Mom was with me the entire way, it made it so much easier

This is exactly how it was (and still is) for me, also.   

Hi Christine,

Your resilience has shown through over and over, and I know you know inside that it will do the same once again. Right now is a hard time because it's just beginning, but it won't be long before you're giving advice to other parents going through it for the first time. You and your husband have shown so much strength and you'll continue to find that strength.

If a port can be avoided, do so. I'd like to hear other's experiences with pic lines. I had one for about 10 days over 10 years ago and I can still feel the spot in my upper chest/shoulder where it apparently left some scarring. Also, when you have a pic line, you cannot have an IV or have blood taken from that arm where it is inserted. I do think it may be preferable to a port though. It does seem like it would be much less likely to cause infections or clots than a port would.

Christine, you know you'll find the courage. You'll shed some tears but you'll manage and still be the great mom you've been all along. 

Christine, I feel for you during this difficult time. You and Lauryn are troopers, and will get through this first time as best as you can. Children seem to accept things easier than we adults do. We will all be with you in spirit, our positive energy all around to help you. Love to you and Lauryn. Jean

Hello Christine,

It is natural for any parent to feel the way you do. Even I can't believe that this day was going to come for Lauryn as she was doing so good with stabilizing her Hb.

You have to be strong from now on. It's not easy and the first step is always the most difficult one, but eventually you will manage it and hopefully it will get easier for you to cope with her transfusions sessions of the future.

I pray Lauryn the least discomfort for her transfusion.

Love and to Lauryn

Take care, Peace!

Hi Christine

My heart goes for you. I know  how the word ''dying inside..'' really mean. But i am sure you will be fine and strong again. Remember you were the one who was encouraging everybody and giving a lot of support to everyone. Remmber your own words '' there will be a cure in our childrens' life'' and i am sure this will happen. So lets concentrate on this and i am sure that God will answer our prayers.

I have another point which is far away from what we are talking about, can the doctor confirm that Lauryn is not an intermedia?? All what she is expierencing can also be symptoms of an intemedia as well. i hope that,  knowing the fact that you and your husband are carriers, wouldn't make you rush in the steps taken. I know that some doctors don't accept children HB to be less than 8 or may be 9. But there are some who can do it ( like my son ). If i knew like you four years ago , i might have transfused and have him diagnoised as a major while he is an intermedia ( confirmed by DNA test ). I hope youcan get my point. Anyway, i felt that i wanted to tell you this though my point may not be right.

Anyway waiting for old christine who is strong and optimistic

Love
Manal

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.

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....

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. 

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

Sincerely,

Lei

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

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.

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.

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