stress overload and fear for my daughter

[Julie359]

Yesterday I learnt that my daughter has a tumor in her lung, they suspect from the CT scan that it looks like something called a Neurofibroma.  We have to now wait for an appointment, which I'm being told should be within 2 weeks and well even thou my GP has said that it looks beign, my medical knowledge tells me that it will only be when they take a biospy and do other scans such a PET that they will be able to say for certain.

I told her yesterday and the look on her face was pure terror, which made me burst in tears and we just sat hugging. I've told her its beign, so to keep her mind as peaceful as poissible but simply having to go hospital and be poked and prodded is enough to stress us both out.  I'm not sure how I'm going to cope with this cause my agoraphobia is still very bad and going into hospital makes me completely feel like I'm loosing control.

These past two years have been just unbarable, I have been so completely ill both in body and mind and my anxiety is wearing me very thin now.  It is problem after problem with no let up.  

I am trying desprately to be grateful for all the wonders in my life, such as my 3 beautiful girls and all the creature comforts we have but these two years have taught me that nothing is more important than having great health, cause being ill like I have and now my baby is sick, all the money and creature comforts in this world mean nothing... It is all about having great health, support, Love and family.  That is what this life is all about!

If you read this and are a believer in God, please pray for us.. Pray for my daughter that she is perfectly fine and for myself, that I'll have the strength both in body, mind and spirit to cope and take her to her appointments.  Thank-you!

[lynn57]

I know everyone has said it all, but we ARE here.  Remember there are real people on the other end of these keyboards.  We are all sending positive energy your way and are here for you anytime you need to talk.  I am so sorry for the difficult time you are going through.  Hope your daughter is doing better and feeling hopeful.  I know you said she was pretty devastated with the news.  You be there for her and know we are here for you.  Let us know how things go.  Pulling for ya!

[mammo]

Since this is an hereditary disease, you should find a geneticist to work with you and your daughter.  They can tell you exactly what to expect, what they are doing in the way of research, new treatments and also the chances of your daughter passing it on to her children. I wish you and your daughters all the best.

[plomeli]

Gosh, I am so sorry to hear about your daughter....just have faith and I as well will be praying for you and your family,,,,God bless you guys.

[Julie359]

Thank-you all, I've also done some research on the net and found a lot of info some good and some bad.  I've read that these types of tumors are genetically inherited and can grow along nerve fibres, so basically it is a nervous system disorder. However it can not be cured only managed.  Although from what I have seen and read she is lucky cause she doesn't have any skin tumors but unlucky cause she may need to be watched for tumors from now on.  

Of course I'll need to sit down with the specialist and have a real good chat about what will be done next and I'm eager to talk to him\her.  She doesn't have a team of doctors just yet, she has only had a CT scan and a report sent to the doctors but of course the team who did the CT would of known what to look out for.  Sadly though this is a life long condition if they are right which spreads randomly throughout the body to few or numerous places.  I just pray that it is a very slow form of the disease and I also need to ask advice about her twin sister, as they are identical twins and therefore share the same genetics... Her sister has been poorly too, so she may need to be checked.

This may open a whole can of worms or present with no concern for the doctors, I just hope and pray for the latter.

Thank-you again... And its lovely Nursegirl that u referred to as family, that's very sweet and conmforting... God bless you.

Big hugs xxx

[RubyWitch]

Doctors are rigorously trained not to give false hope to families. I don't think your GP would have told you that the tumor looks benign if he wasn't almost positive. And remember that he has consulted with the other doctors working with your daughter.........if the concensus was that it is benign, I think you should put your hope and trust in these professionals who have seen thousands of such tumors.The other tests they will be doing will simply confirm their diagnosis. I believe this with all my heart.
Be strong Julie. As mothers, we are sending you our energy, our support, our prayers and our love.

[nursegirl6572]

Julie there is not much I can say to make you feel better but just know that your MedHelp family is here for you.  I know it's scary and going to be hard with the anxiety, but I also wholeheartedly believe that when we get into a position where we HAVE to do something, we just do it.  

You and your family are in my thoughts and prayers.

[mammo]

Juile I am so sorry to hear this.  Having dealt with illness with my own children, I know all that you are feeling.  Pour all you have into getting your daughter thru this, while staying strong yourself.  I know it's scary, but these do tend to be benign and I will keep your daughter, you and your family in my prayers.  As a parent we can't help but think the worst, but just try to remain positive for both you and your daughter.  Your concern and need to be there for your daughter will out-weigh your anxiety issues.....it did for me.  I know there are no words to ease your mind, just know that we will all be praying for you both.  If you ever need to talk or just vent, feel free to PM me.  Big hugs to you.