so scared... daughters results today

[Julie359]

Well the last few weeks have been extremely tough, my daughter recently had her biopsy for the tumour in her lung, which has been discovered is located right next to her spine, and well today we get the results.

I'm sick to my stomach, I've had to dope myself up this morning on benzo's but still find myself hyperventilating when I think about it.  I'm doing my breathing exercises and that is helping.  But right now I would do anything just to be held and given a massive cuddle.  My daughters are showing a brave face and I have to look strong too for them, but inside I'm terrified.

Please pray for us!

[mammo]

I've been there Julie, be strong and hold tight to your faith.  Children are so resilient!  You'll all be in my prayers.

[JGF25]

I don't think it is possible to break your spirit.  You have a very good outlook on life and so does your daughter with her "jellybean."  I will keep you all in my prayers and hope that the surgery goes perfectly and you know that God will be in that operating room with her.  

[Julie359]

Anway, it is extremely sad that she has this and has suffered so much over the last 10 years, cause thw twins are amazing girls, so kind, totally love you to death, smoother you with affection, they have the funny bone as well, just make you laugh until your sides hurt adn they bring other peoples randomness out and before you know everyone is having a really good time joking.  They have always been amazingly spirited, drove me to complete exhaustion when they were little...lol always into mischeif but not anything real bad, but very curious and full of endless energy.

Ive always said that God blessed me so much with giving not one but two angels from the day they were born.  Its just so humbling to know that i have a piece of heaven with me every day, laughing and giggling and hugging me.   She doesnt deserve any of what is happening to her, none of us do.  But on a positive note at least it isnt cancer and it can be treated, but sadly this is just the begginning of a very long road, one that i hope doesnt break our spirits...

[Julie359]

With the research ive already done prior to this appointment i found that with her medical history it sounds very much like she has a genetic, life long condtion called neurofibromatosis, which means that throughout her life she can have these tumours grow randomly in her body and on her skin, they grow off the nerves....her tumour looks like a fully grown kidney, funny enough though my daughter has nick named it jelly bean..lol

so now because of my reasearch, the fact that this is very dangerous and that i made it very clear that we needed answers after repeated undiagnosed hospital visits, the consultant has now referred her to Guys Hospital to see a top neurofibromatosis specialist.  He reckons most people have to wait months to see her but cause of the location of the tumour she will be seen in a couple of weeks.  Then they'll also do a PET scan do see if there are any other tumours in the body and confirm through a genectics test if she does have this condtion.  The consutlant and I firmly believes she does.

Surgery carries a risk, of course, they are saying that there is a chance of nerve damage which could affect her neck and a slight chance of paraysis.  But saying that if nothing was done she would become totally parasylised from the chest down and well, die from the complications to the aorta, so.

Im gona insist that her twin sister is tested for this condtion as they are identical twins and also maybe ask for a for myself to be tested as it may well give me an answer as to why i suffer so much as well, this condition is genetic.  The Neurofibromatosis nurse i spoke to a while back said that a lot of people have this condtion and dont even realise it.  They have symptoms that are noticable but not severe enough for this condtion to be even considered... and as the nerves are affected i think i wana have a little chat.    

[Julie359]

Thanks guys, means a lot.

Well in a nutshell, it was a horrible day yesterday and am so glad that its over and the news was very bitter sweet.

The tumour is benign as we all suspected, which is fantastic, however it is a rapidly growing tumour and is in a very dangerous place. They are saying it is growing off a nerve from the spine and is pressing on the spine and the back of her right lung.  See we kinda knew this part already from the CT scan she had, although i thought it was actually in her lung at first... but the other kick in the face is that it is dangerously close to the aorta which is one of the major arteries to the heart and if left to grow any bigger it will start to invade and put pressure on the spine, the lung and heart.  She is having difficulies already with her circulation, getting numbness, coldness and pain in her hands and feet and pain in her spine and lung, so there is no choice it has to come out.

[erin626]

Of course you're terrified! Any parent would be. As with everyone else I will absolutely pray for you and your family.

[JGF25]

Oh No.....of course you are having to dope yourself up.  I will keep your family in my prayers.  

[plomeli]

Wow I will be praying for you and your daughter, God bless and please keep us updated! Hang in there because your daughter needs you so much right now!

[nursegirl6572]

I cannot even imagine the anxiety you're going through!  My thoughts and prayers are with you all for good news.  We're here for you, whatever you find out.

Be sure to let us know when you can!!!!