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Advice on My 2 year old Son

harleysmummy's picture
harleysmummy
Posts: 3
Joined: Nov 2011

I’m not sure if this is the right place to find some advice but I hope it is,
I’m from the UK & I am finding it very difficult to find anyone who is or has been in my position as Lymphoma in children is rare.
My two year old son has had enlarged lymph nodes for about nine months, it was first noticed with two in his neck but since then this has multiplied to more in his neck and also two in the groin.
I wasn’t really concerned at first, I was hoping the doctors were going to say it was fairly normal for them to have swollen lymph nodes. But as they have multiplied and his face is pale and in areas blue & purple my concerns are increasingly growing, his blood tests came back normal but this did not satisfy me it doesn’t feel right.
I’ve done some of my own research, I want to know if my research is right & if his symptoms are significant and how other people or their children were diagnosed with lymphoma.
Through my research I personally believe Harley has a low stage Non Hodgkins Lymphoma. Im frustrated because NHL is significantly rarer & he is still playing with his toys doctors will not do a biopsy. From my research NHL often shows NO symptoms apart from the lymph nodes being persistently enlarged, but obviously there are cases of other symptoms such as high unexplained fevers, which Harley has – he has had two in the last month with temperatures to 39.4 degrees Celsius and sickness but no obvious cause, Harley has no infection he has been tested for all the common ones including urine and he has had none and infact had no infections for about 6 or so months so these fevers are completely random and with no obvious cause. Rare to the doctors shouldn’t mean not testing for it because it will always be someones child..

Harley has had a chest x-ray and his spleen checked. These came back normal, but through my research I have also discovered these things aren’t always affected, it is less likely in NHL for these to be effected, and if they are it would be a higher stage lymphoma e.g. stage 3/4 +

Harley has had blood tests, but I have also discovered blood tests should only be used if the child has been diagnosed as the bloods will be tested in a different way to try and identify a stage rather than a diagnosis, it is extremely unlikely they lymphoma would be found in a blood test.

Harleys enlarged lymph nodes are not massive, I have to point out the lumps - but they are enlarged, have multiplied & spread and in one side of his neck they have noticeably got bigger. The doctor was the one to find them enlarged in the groin, and find the others in his neck.

Basically, I have a series of hospital and pedeatric appointments this month, my concerns are high and the doctors aren’t, I believe the risk benefit of a biopsy is worth it and they do not. Untill Harley is awfully ill they will not do anything, his fevers are increasing and so are the lymph nodes – am I right to worry? And what do I do to get the doctors to agree with me without Harley getting worse.

P.S I am aware and obviously hope it is something else as I keep being told this could be something else, but I am not being reassured as to what ‘else’ it could be. My nan also has lymphoma, I know they say there is not proof that it Is hereditary but there are often cases of two family members having lymphoma at the same time.

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Welcome to this site and what a wonderful child you have.
I don't have experience with pediatric cancers but from what you have
written, obviously something is causing the fevers and enlarged
nodes.

Are you still living in the UK?
Are your appointments with pediatric oncologists?
You might want to check with the Childhood Cancers board also.

I'm sorry I can't be much more help right now but
there are wonderfully supportive and caring people here.
Others should be responding soon.

I hope everything will be okay.

Please keep us posted.

Big hugs and positive thoughts,

Jim

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi
Your son is beautiful. I don't know anything about childhood lymphoma but I would keep asking questions until you are satified with the answers. May God bless you and your precious boy.

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Harleys mummy,
I'm so sorry Harley is going through this. It sounds like you are staying on top of this. The fever thing needs to be addressed and the swollen nodes need to to be carefully watched. I don't have a clue what the testing consists of for little ones with swollen nodes. We adults get CT scans etc, but I don't know if little ones can get that done or not. You are right to worry, and if Harleys present doctor isn't satisfying your fears or concerns, then I would suggest finding another doctor to get a second opinion. Please come back and share with us how things go. Best wishes to you and your sweet Harley.
Love...Sue (FNHL-2-3A-6/10)

harleysmummy's picture
harleysmummy
Posts: 3
Joined: Nov 2011

Thank you for your kind words about harley,

I am still in the UK & no unfortunately i do not believe they are oncologist pedeatricians, just general pedeatricians this is because i have had to fight very hard to even get harley seen, they dont believe he needs to be seen so this is the little hope they will give me with just yet another general appointment, however i will continue to fight and i am feeling fairly prepared to voice my concerns, challenge their opinions and state facts with the research i have done

If i keep meetibg refusal and keep being dismissed i will have to take my fight elsewhere, i am hoping it doesn't come to that as it would cost me more money than i have but i am prepared to do this if i have to because i know something is not right with harley.

His last white blood count was elevated unfortunately i will not know the exact details of the WBC untill next tuesday,

Do any of you have NHL or HL? how were you diagnosed and what did your tests come back with - My nan had no symptoms at all apart from one swollen node and she had stage 4 HL. there is alot of research going on in sweeden and in the US at the moment to suggest that in some families there is high evidence of lymphoma and other blood cancers being hereditary

I will keep you updated and share my progress with you

x

amorriso
Posts: 186
Joined: Oct 2010

Hi. I read your note about your son - such a worry for you! I happened to be chatting witha friend last night who used to work at the Royal Marsden hospital - she was an oncology nurse there and highly recommends it as a cancer center.

I cant tell you much more about it - but since it is in the UK it might be the place to go. It has a good website - give it a go.

All the best for both of you.

andrea

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Harley's Mummy,
Do whatever you need to do for your son, sometimes the Dr's are very dismissive, it has happened to me. Who else will take care of your beautiful son if not you!!! If you're not satisfied with the answers they're giving you then go to another Dr. sometimes we can feel when something is wrong with our kids and we're usually right. So keep on fighting and I'll be praying for your son that nothing is wrong with him...

Sincerely,
Liz

gpespinosa's picture
gpespinosa
Posts: 25
Joined: Aug 2011

Im sorry to here what your little guy is going through, but he is very blessed to have such an amazing mother. Its unfortunately you have to keep pushing the doctors and do your own reasearch, but don't give up, you will find answers. I was diagnosed last year with NHL diffused large b cell. I had a lot of the symptoms that I have learned to be common, the night sweats, fevers, chills, itchy skin, but no swollen lymph nodes. My doctor claimed I was too young to have cancer, and thats that I was 26, so he did not want to do any test or studies either. Now I wish I would have been proactive and done some of my own research as well. Keep insisting and don't lose hope. I wish you and your son the best.

Gaby

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