My 14yr olb baby brother
Posted on: Mon, 23/06/2008 - 00:05
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My 14yr olb baby brother
Hi everyone,
I am in total shock and don't know how to feel or what to think. Firstly, i have spent the last 3 days googling and trying to find out just what our family is going to be facing. I have quickly read some of the remarkably brave posts on this forum and i am looking for advice.
My 14yr old brother earlier this week had a swelling in his neck. My Step-mum took him to the doctors on Tuesday. Doctor said he would book him in for blood tests in 2 weeks time. On returning home she called the doctor back and asked if the blood tests could be done at the surgery (he has a fear of needles, or he did have) doctor had them back in on wednesday for bloods. Thursday, Doctor had called the house, but my dad and step-mum were both at work. Again on Friday, doctor called the house, then posted a letter through the door and een knocked next door neighbours door and told them to send them straight to local hospital. They fetched him from school. Got to the hospital, ran some tests and were about to send him away with anti-biotics, doctor decided that they would have him x-rayed. Kept them waiting, returned and said that after a 2nd opinion from another consultant they both agreed there were lumps and shadows showing on x-ray. Kept him in, put him on a drip and started making arangements for him to be transferred to Birmingham Childrens Hospital for Monday. Saturday, took bloods every 4 hours and by the afternoon decided to transfer him to BCH that afternoon for biopsy. Saturday PM, settled him into BCH. My dad called at 9.30pm to tell us all they are definately cancerous tumours and that they had drained fluid from his lungs!!
They can't do anything until the pressure on his chest reduces, treating him with steriods at the moment. Amongst the panic, my dad thought he heard them mention leukemia, but after much googling this sounds more like non-hodgkins lymphoma as they keep refering to lymph nodes. We don't know anymore than this at this stage. I am worried stupid.
Its all happened so quickly, which i am grateful for but it's like a bad dream. Step-mum thought it was glandular fever or a virus. In hindsight, Dad says he had lost his appetite, lost weight in last few weeks. Will he need chemo? Is he going to be in hospital for weeks/months?
Is it or will it be localised or is there chances of it spreading?
If anyone can maybe answer just a few of these questions, so i can understand. I'd be so grateful.
Going to try and get some sleep now. Look forward to any replies tomorrow.
Many Thanks
a very worried Gina, Solihull
I can't give you any medical insights but I can give you and your family my most positive thoughts and a session of long distance EFT for your brother. Big love and big hugs from Oz
Patricia
Like Patricia above I cant give any medical advice just lots of support.
Please keep us informed.
Lesley xxxx
Hello I hope that you get some answers re your little brother very soon Gina. This site is a great place to share your woes worries and good times too. I suspect that a call to the cancerbackup helpline may be more fruitful than asking us to guess - I know they will give you sensible advice Gina. However we have all been there waiting for diagnisis and agonising over the what's - if's and but's. Here we will send you our strength and support to carry you through the treatment journey that your brother is facing. I promise you once you know all the facts and exactly what you are facing your inner strength will appear ready for the fight - it is the not knowing which twists our minds. Please keep adding to your blog and letting us know how he and you are doing. Strength love and hope, Jools x x
Sorry you are having such an awful time Gina. As Jools says, this is a fantastic site, where we try to help, listen and support each other.
As you said Gina, it has all happened so quickly and you have lots of questions at this time. Try to take one day at a time Gina.
keep us updated,
((((Hugs))))
Oh Gina,
How horrible for you, your brother and the family; all I can say is that he is young and strong and will have the best chance. In my experience people really do have good days and bad days and not always when you expect them - so I wish you hundreds of good days and hope that the last few days are the worst ones you ever have to live through. He is lucky to have a fab sister who has done everything she can to find answers. You are brilliant!
Sending lots of love,
Best wishes, Clarity.
Wow, thanks for all your messages of support and words of comfort and kindness.. i am truly overwhelmed. I feel a bit more positive and focussed now.
I have spoken to the little fella this morning. He was going to try and have a slow walkabout and find the teenagers room today. He amazes me how positive he is being so i can only justify this by doing the same.
We (the family) all just need to keep his spirit going and i am sure that he will get through the forcoming.
Again, thank you so very much. Words, we take them for granted, but your words although we are all strangers, are full of hope and and encouragement.
I shall keep you all posted.
With Love
A now optimistic Gina xx
Hi Gina,
I'm glad to see your a bit more optimistic, I was diagnosed with Osteosarcoma (bone cancer) when I was 21, I'm now 23 and last year I had nearly a years worth of treatment and some surgery, I'm in remission now and getting stronger each day. On here we all understand the agonising waiting stages and hope you get some answers soon. I had my surgery at the Royal Orthopedic Hospital in Birmingham and they were great, I'm glad your brother is in a suitable place for his needs. There is a chatroom on here, you should try joining us sometime, there are lots of lovely people on here to offer lots of hope and support.
Hope you don't have to wait too long for answers, keep us updated.
Katie.
Gave Tom a quick ring this morning. He had an x-ray and they found some more fluid which they going to drain off again today. Lumps seem to be reducing slightly.
Still unable to diagnose which form it is in but doctors have indicated that it is one of the following 3
T-Cell, B- Cell or Large Cell Lymphoma. They are treating him for the T - Cell wich is the more serious of the 3. Possibly need to do another biopsy, as they didn't have enough tissue from the previous one.
He still in good spirits. Probably going to go up tomorrow to see him.
Gina
Hi Gina
My name is Kevin, I am 52 years old, I have just been diagnosed with Non Hodgkins Lymphoma, I am realy positive I will get better, the reason why I am so positive is that my youngest son was diagnosed with T cell Non Hodgkins Lymphoma when he was 10 years old, he is now 26 and gets married this year. My belief and strength comes from watching my son win his fight against this disease, when he was first diagnosed like you, the future seemed impossible and frightening for all concerned. If it will help we live not far from Birmingham, your brother can meet my son Chris and see that it is treatable and he can be completely cured and achieve all his ambitions and live a normal life
All the best, if I can help in anyway please just ask
Kevin
Hi Gina, My name is Michele and I am a mother of 3 young boys, 6, 4 and 1. And a sister to 2 beautiful sisters. So from both angels I just wated to send you and your family lots of love, strength and hope in this distressing time. You have found a brilliant site here, but beware the internet can also be a place of doom and gloom. When you find a site like this with lots of hope, stick with it. I dont google anymore as it became too depressing with my type of cancer. Stay strong, laugh lots and remember the power of positive thinking is a wonderful thing.
With all my love and positive thoughts,
Mihalo xx
Hi Gina i hope u got some sleep last nite
i understand where you are coming from
i found a lump in my groin went to GP at the time
& he said it was nothing to worry about
so i took it he knew wot he was talking about
the lump didnt hurt so i left it
went back a year later then he sent me to get x-ray
at local hosp then got a letter from the hosp in Plymouth
went there didnt come out for a week they did an op
which i knew nothing about after that they put me on
day case chemo every 3 weeks that lasted for 6 monthes
but as your brother is only 14 i don't know if they
will give him chemo or not seeing as it is very powerful
yes it can spread mine has but that does mean it happens to every one
just something i was told while having treatment
if u find a lump anywhere & u can press it & it dosent
hurt go & get it seen to STRAIGHT AWAY
Anyway Gina finger crossed that it's not NHL
Steve (creamcake)
My sister was diagnosed with non hodgkins lymphoma in 2003. She is my older sister, had a 9month old baby and had spent 6 months fighting off a brain virus before symptoms started in her chest.
I won't pretend it was fine, because it was the most horrendous time. The lymphoma was very agressive and very advanced by the time they diagnosed her. BUT she made it and we made it as a family. Now she is pregnant with her second child, she's spent 2 weeks walking across the sahara to raise money for charity and is training to be a teacher.
This post is a few months old so i'm sure your in the thick of things right now. Just remember there is light at the end of the tunnel, howver bleak things look.
hi there..
Im very intrested in the nhl..as i have just lost my 19 yr old son a month ago..it a long story..we knew he was ill but not that ill..he lost weight..etc..rushed into hosp 17th sept..had cancer confirmed the nxt day...fluid drained from lungs n around the heart...fri..died in icu 20th..chris was much too far gone for them to save him..his illness had been mistaken as depression..all gp did for him was give him a good talking to..he went thru hell....im having trouble getting over it but he had a bad cancer...
love to you all.xxx
Oh I'm so sorry about your son tricia. As a mum myself of an 18yr old daughter my heart goes out to you. It's still very early days and you must be feeling so raw emotionally but thank you for being so brave to share your experience. There are no words that I can say that will make a difference to what has happened and how you are feeling but know you are not alone.
May I send you much love and a gentle hug at this time?
Take care of yourself tricia
pheonix xxx
Tricia
I to am sending you kind thoughts and hugs. Everyone here is thinking of you and hopes that as time goes things become a little clearer and easier. When you need help drop by here or one of the chat rooms someone will always talk to you.
Lisa XXX
Hi there Tricia,
Your original post is a few months old now. So I suppose that your brother now has his diagnosis, and you and your family is over the initial shock. He probably has a protocol and it's 'down to business' with treatment. It's very hard. But you will all get through it.
My son was diagnosed with ALL when he was 7 (age 10 now). I know how you have felt, because when we received the diagnosis, the shock and the grief was absolutely debilitating. Practically, in my mind, I wanted to be up and running with the new situation. I knew that I needed to learn more about the disease, get my head around the treatment plan, familiarise myself with the routines of the children's oncology wards, and get to know the plethora of new people that were coming into our lives. I had to inform relatives and friends, I still had to be the calm, reassuring loving mother to both of my kids (THAT was the hardest). With all the sleeplessness included, it took about three weeks to get over that awful, initial shock. After that, there were bad and sad days, but I had a better grip on our situation. Alexander had many hospital admissions for infections or side effects from chemo, he even had a stroke at one point (incredibly stressful at the time, but he has fully recovered we think). The thing is, that these days the odds generally for kids with cancer are very good. NHL and ALL - depending on the risk category - have good survival rates. The treatment is long, and the infections and low immunity make you sometimes feel that it's two steps forward and one step back. At the same time, my son (and your brother) need to have a childhood, need to have a family life, need to have friends and school. And it is hard, hard, hard on the siblings. Sometimes I used to get down when I'd see how many sick kids and new diagnoses were on the ward. But then I realised - every sick kid in there is either on active initial treatment or is one of the minority who relapse. There are a large number of adult survivors of childhood cancer out there that you don't see in the hospital, I'm hoping my son and your brother will grow up to be one of them.
Good luck,
Lindy
PS
We went through treatment with a boy (diagnosed at 12) with NHL. He's now off treatment 10 months and doing really well. Just watch out though, when a hormonal teenage boy is on prednisone during treatment - you can't even look sideways at them before you get an argument!
Hi..this is to the person that left the last post..im tricia and lost my 19 yr old to NHL....the person that as a brother with it is at the top of this page...
but no worries eh?
love
triciaxx
Gosh Tricia,
I'm very sorry and didn't mean to hurt your feelings.
It was very late here when I read through the posts and then posted my message. I wasn't paying attention, looked only at photos and went right off on my own path. Blah blah. I need to open my mouth even further to shove my other foot in it.
I am very, very sorry.
I have had friends who have lost their kids, and bad as things have been for us, I know I can't imagine what that loss would be like. At one point we almost lost Al, and at another point we were told he might have a degenerative brain disease induced by the intrathecal chemo. We still don't know if the latter will develop. I thank god that we have him with us today, how lucky we are, but I know how cruel life can be within just a blink of an eye. I don't know what it would be like to be an adult with cancer - truly awful. With kids it is exceptionally cruel. Innocent, promising energetic lives stretch ahead of them and then this bloody disease gets in there and robs them. Watching a kid suffer, and trying to explain to them how unfair life can be when they ask, makes you want to rip your heart out. And then at the end of that experience you have had this enormous loss. I am just so sorry Tricia.
I'll be thinking of you all day,
love Lindy