I am new here. I have been reading the discussion boards for several weeks, as I have had a horrible suspicion that my son may indeed be ill with a lymphoma or leukemia. It started 7 weeks ago with several unexplained high fevers (almost up to 104 with no other symptoms). Then the infections started. First strep, then what they thought was scarlet fever, than back with an eye, ear, and throat infection. During round two of antibiotics, he had a noticeably large lymph node behind his left ear that popped out. His PCP said this could be because of his infections and not to worry about it. That same week, he started complaining of pain in his left lower leg. So bad that he wanted me to carry him everywhere. He would limp and cry in the middle of the night. He would tell me during the day how tired he was and how much his leg hurt. His Dr. couldn't figure out what was happening. She ordered Xrays and labs. Xrays show soft tissue swelling around both ankles. His lungs showed swelling of his bronchials (but he never had a cough). His liver was slightly full. Still no answers. We were sent to a pediatric cardiologist to rule out Kawasaki disease. His echo was normal. We were then sent to ID specialist. Monospot was positive so we were sure this was the cause of our problems. We waited for titers to come back. Then we received the news that he was negative for EBV and all other strains that cause mono. Now we had a false positive monospot to deal with. Causes could be RA, lupus or a malignancy. We were sent to pediatric rheumatology and I had my fingers crossed they would tell me they thought he was suffering from juvenile RA (which is really very rare). This was last Thursday. We were there for 3 hours and two of the Dr.s came back in the room and told me they thought he should see an Oncologist as soon as possible for a BMB and lymph biopsy. Our appointment is Wednesday at 3. My 2 year old son is still so tired and complaining of pain. So much pain and I can't help him. The only other significant finding besides the positive Monospot was low absolute lymphocytes on all three CBC's.... but not "too" low as the Dr. told me. (around 3400, and normal is 4000). I know cancer in children is rare to begin with, I'm just wondering if having normal CBC's with a false positive monospot means anything to anyone here. I can't seem to find someone in the same situation. There is no doubt something is wrong with my little guy. He is a different person now and I feel like time is ticking by so slowly until we see the Oncologist on Wednesday. Then there is wondering if he will get the BMB the next day or what to expect after that. I have just had a feeling since week 3... does anyone have any words of advice? Thanks for taking the time to read this. Can't really express my worries to anyone else.
How long has this lymph node been enlarged?
I am in a similar position - we are in the UK and it is difficult to find anyone or anything relating to a young child having lymphoma as it is so rare.
My son had two swollen lymph nodes in his neck we spotted arounf nine months ago, since then its been a bit of a struggle & a long story but his lymph nodes have multiplied to about 3 in the neck and two more in the groin.
He has also been experiencing high temperature fevers without an obvious cause. a symptom of lymphoma, however lymphoma often shows no signs or symptoms apart from the swollen lymph node itself. Harley is two and he can not tell me if anything hurts or how he is feeling within himself. due to the multiplying lymph nodes & fevers and some colouring in his face he has had an x-ray & his spleen & liver checked which were normal but as far as my research has taught me if he has swollen lymph nodes in the chest or his spleen was enlarged he would have a higher stage of lymphoma (3-4)
His blood tests showed an elevated white blood count and i was told this would be due to infection but harley has had no infections for about 6 months, hes been tested for urine infection and your obvious others and they are all clear. He is not ill, he gets sick with random high temps, can often seem sleepy and his face is pale with blue/gray markings under the eyes and around the nostrils. We keep being told that this could all be due to some other cause, although we have had no reassurance as to what 'other cause' it could be, i personally feel that harley has a low stage Non-hodgkins lymphoma. But untill he worsens, no one will biopsy him - it is not often that people are diagnosed untill they reach a high stage, i feel i have recognised it a low stage god forbid he has it.
My advice is to keep yourself educated so you feel confident in knowing what to say to the doctors, keep a record of his pains and fevers and all the questions you have and want to ask.
Trust your instincts and keep pushing untill you are satisfied that enough is being done for your son
Im happy to update you on our progress with the hospital
Hi Harley's Mom,
First of all, I hope with all my heart that your Son and my Son don not end up with a diagnosis.
I have the same feeling as you and I shared it with the Dr's at Stanford. I truly believe he has a beginning stage of lymphoma. They are not usually diagnosed until stage lV and I told them that was not an option for me. I want to know now, when he has the best chance of fighting it for good. His lymph node has been enlarged for over 7 weeks now. Infection has been ruled out. He is tired and his bones hurt. I just feel we did everything we could to determine another explanation. The Rheumatologists said Arthritis was unlikely. I hope they are wrong. I truly do believe it is because of my monitoring and pushing the Dr's that we have come as far as we have. Seeing an Oncologist tomorrow to likely schedule a BMB and lymph biopsy and he hasn't had spiking fevers. I have heard its hard to get attention when a child is missing the high fevers everyday and the crazy CBC counts. I guess we are blessed in that sense. If it is cancer, I will now shortly. Best of luck to you and your boy and keep pushing for answers as well. I will be praying for you!
Just wanted to give you an update. I'm curious to see what they tell you at your appointment next week. The Oncologist said she could rule out lymphoma by just his physical examination. She said the 1 cm enlarged node behind his neck did not worry her. His LDH and other markers in his blood are also normal, so she said she doesn't feel she has to do a node biopsy.
She did say leukemia was a possibility. He had some questionable cells in his blood smear, and the pathologist wanted to repeat them. She will be doing a bone marrow biopsy and aspiration on Monday of next week to either rule out leukemia or diagnose and treat. Unfortunately, the BMB does not rule out lymphoma, and I wish we were doing the node biopsy just to be extra cautious. If the BMB is negative, I would hate to have a lingering feeling it could still be lymphoma just based on her feeling and the negative blood work, which we all know does not always help to diagnose lymphoma. Let me know how your appointment goes! Thanks!
Thanks for the update,
My heart goes out to you, i know you must be extremely worried at the moment and i wish you both the best of luck on those results and i really hope it is not leukeimia. Let us know how this all goes do you know when you get the results. If it does come back negative, you probably will not feel at ease yet which is still horrible - Lymphoma should not be ruled out due to the size of the node, it should be to do with the persistance of it and if there are any changes or others pop up - infact i don't wish to worry you further but i have had two people tell me they had all the symptoms of lymphoma, no nodes but were then unfortunately diagnosed with lymphoma. If the BMB is negative, i feel you should keep pushing - I do slightly agree with the oncologist, as they are specialists in their area and the node has only been lingering for seven weeks - although this is a long time, it seems they do like to wait longer like i said before harleys nodes have been enlarged for 9 months now. If it is negative & they are still refusing to a biopsy you need them to tell you exactly why and to then give you reasons for all his other pains/feelings etc because there has to be a cause, whatever it is - If you still don't feel comfortable i don't know what your healthcare is like but if i keep meeting refusal i will be going private and paying for a biopsy, is this a route you will be able to take?
I wish you all my best over the next few weeks
& i will update you on our appointment for Tuesday
It seems you have good medical care. The focus has been spot on. Mono or lymphoma are certainly issues that would come to mind with these symptoms.
You might want to discuss types of lymph node biopsies. The Fine Needle Aspiration is not as accurate as the surgical removal type.
You should also ask if a Flow Cytometry Test will be done and discuss its usefulness.
Here are a couple useful pamphlets on lymphoma:
Hope all goes well for him.
Thanks so much for the information and the links! I didn't know anything about Flow Cytometry. I will definitely bring it up tomorrow. I also feel that we have been so lucky to have had the medical attention to bring us to this point. From reading other threads, I see that it can sometimes be difficult to be taken seriously until things have gotten to later stages. Best to you.