Hello and thank you for letting me join.. My 15yr old son had blood work in Sept 2011 and nothing was abnormal at all.. In November he came down with what they thought was mono.Sore throat,very tired, cough, headache and just felt yucky. The labs didn't show it was that, Epstein-Barr , cytomeglovirus, strep or anything else. just that his WBC,RBC and platelets were a little low. He was not any better in Dec so they did more blood work. The RBC were back to normal but the WBC and platelets were lower than the month before. In January he was still not right, still really tired all the time, horrible knee pain and welling, all over pain, loss of appetite, not sleeping right, nightmares about dying, concentration problems at school, and just not his usual self. They did more blood work and again the wbc dropped along with the platelets and rbc dipped a little.. They still said it was likely to be mono but all of that came back normal.. in march I took him in again because he starting getting these red rashy areas in random places and they would bruise seconds after they would appear. His knees are swelling up a lot and he is unable to climb stairs without help, or get up from a seated position.His fatigue is horrible and he is pale, running fever and having chills along with everything else. So they did more labs.. They tested for all kinds of autoimmune disease (I have lupus) and the results were all normal for those. She then proceeded to tell me that his wbc had dropped a lot since the lab in Jan and his platelets also. She said that his rbc was a little low but not bad. She said that she wanted to do a blood smear and send to pathology for further evaluation and that she was referring us to Oncology/Hematology, he would need a Bone marrow aspiration. She called me yesterday with the results from Pathology and they said that the findings are consistent with both autoimmune and malignancy, that further evaluation is best at this time. So the Dr said that they will be testing him for Leukemia and Hodgkin's Lymphoma, not sure if it was non Hodgkin or not.. Also Aplastic anemia and autoimmune.. I know that they don't do bone marrow apseration for Lupus testing unless your white cells really dip down and they are actually checking for cancer at that point.
I guess what I was wondering is does this sound familiar to anyone? Is it possible that they are just being overly cautious or should I prepare for the worst? My gut is telling me its the worst and that he has a tough road ahead of him.. but my gut isn't a medical professional. I really appreciate everyone's time! I don't know the counts for all the blood work. They are sending me copies.
have a great day and hope you have a great weekend!
I am sorry you even have to think about being on this board! I also am sorry--and hesitate-- to say (and, keep in mind, it doesn't MEAN anything--just saying...), your son's signs, symptoms and even some of the testing are almost exactly what my son experienced 3 years ago--right down to his age and the time of the year! Only difference is that my son's counts dropped dramatically by the end of February ('09), so they sent him right to Childrens Hospital and bone marrow biopsy. Plus, he didn't have the swollen joints and nightmares that I know of, so he wasn't ever tested for autoimmune problems. It was ALL. I really hope your boy doesn't wind up with a cancer diagnosis, but I know how distressing it is to see how bad he feels and not know what is going on! My son was convinced I was ignoring the fact that he had the flu and was begging to go to the ER on the day he was diagnosed.
If this offers any encouragement, I will tell you Graham is a young man now, completing his first year of college, is feeling well and is looking forward to his Off-Treatment day of June 12!
Hoping for the best,
A bone marrow biopsy is certainly appropriate in the circumstances, to be honest I think it is long overdue. My son exhibited fairly similar symptoms (fatigue, knee pain, fever from ear infection, paleness, swollen lymph nodes) and we took him to our local doctor 3 times in the space of a week. About 10 days after his first symptom a cbc revealed low wbc, low hgb and low platelets and we were sent straight to a childrens hospital. The hospital did a cbc which came up with the same results. They told us straight up that the blood counts were indicative of a virus attacking the bone marrowr or leukaemia and that a bone marrow aspirate was the only definitive test. The bmb revealed leukaemia. This difference with us is this was over a course of 12 days not months as in your son's case. Acute leukemia's usually progresses very rapidly, but we do come across cases on these boards where it appeared that the disease progressed more slowly over a longer period of time.
I hope that it is not a malignancy but it is certainly time to do a bmb to rule it out.
Thank you for the reply. I am very upset with the way that this has been dealt with at this point. I thought it would move faster concidering the circumstances.. I mean its not like he needs to see the orthodonitist of something. I called again yesterday to the offfice that is supposed to be seeing him but they never returned my call, it was later in the day on in a friday but still.
I know in my gut this is what is store for us and I prepaired to go forward, i just hate that they have me at a stalemate.
Again thank you both and I figured that would be the answer to my question. i read through a lot of the posts on here and I noticed a lot of similarities in my son and the other teen cases on here..
I am so happy that your son is doing well and is in college.. Those milestones my seem so huge now concidering what it has taken to get there..
Againt thank you!
I am sorry you are going through all of this. My daughter was diagnosed with lymphoma on September 7,2011 at the age of 15. She started having back pain near the end of June. It got so bad we had her to walk in clinics & the ER twice. Every time we would go everyone notices her wbc was high & getting higher.Finally September the ER did a CT and found tumors behind her kidneys. We were told it appears to be Lymphoma and was transported to our Childrens hospital hemotology/oncology united. After more blood tests and PET scans,CT scan,MRI and a double bone marrow aspiration the results were in... Anaplastic Large Cell Lymphoma. They had to do the bone marrow to make sure the cancer had not gotten into the bones. Thank God it hadn't! After all of this & finally getting the answer they waited another 4 days to admitted her & started chemo.
It is so hard for a parent to have their child go through all of these tests but it is truly the best way to see exactly what is going on so they can be 100% positive. I wish you and your family all the best & pray that the test results come back with good news. I am new to this site but have find people who have been wonderful with answering th millon aand one questions I have.
Chz was dx Dec 2007 at the age of 15.5. Four mos prior (August), he complained of heel pains. Since we were overseas on vacation, we tried giving him tylenol. The pain was off and on once we came back home. The pain surfaced again a few weeks later. His pediatrician rx antibiotics - his ESR was unusually very high! When the ESR went down, the pain was now moving to his shin area. We went to a PT. The few sessions did not help out. We spent a fortune on knee, ankle, wrist and elbow braces as the pain has now moved to his arms. At this point I knew something was wrong as he cannot perform the simple task of opening a car door! We were referred to an orthopedist. Nothing. He had numerous CBC's, a CT scan and an MRI which proved nothing. We went to a Rheumatologist which after a few visits cannot find anything wrong after prescribing meds for arthritis. We went to an onc/hematologist who then ordered a BMA. Prior to this, his CBC looks normal. The BMA confirmed 26% blasts but his CBC is still normal. He was dx Pre B ALL high risk due to age. The first infusion of chemo was like night and day. All his pain was gone and he felt like a normal kid again.
As you can see, it took 4 mos before Chz was dx. In our case, our doctors did their best by diagnosing thru exclusion. He is now 19 and is a very happy college sophomore. I wish your son the best - hoping that leukemia is excluded!
Hi - sorry that you're here....the symtoms are similar to my daughter before her diagnosis at age 12 last summer, she has Pre-B cell ALL - prior to diagnosis we were told that it was definitely auto-immune due to her raised Esonophils - but when all tests came back negative - it was determined as ALL though bone marrow biopsy. She only had 7% Leukemia at diagnosis, and low white blood cell count - but was put on High Risk protocal due to age.
Of course, I'm hoping that this is not the case for you son - but I wanted to say, that she just completed the first 10 months of treatment, and is now going to monthly appointments, and everything is looking very good! So - if this is the case, and you move in this direction, though it's scary, don't lose all hope, your family can get through this too -- and you're in the right place for help and advise. Keep us posted ...Becky
Thank you all for you kind words and experience with this.. Its like a really bad dream. I did let him go away this past weekend to the DCON conference for Kiwanis Key Club. Just incase it was the last fun thing he got to do for a while. It had a really great time other than, his teacher called me in a panic(he was 5hrs away, near Bostons Childrens, what better place to be really if something happend) because his glands in his throat was swollen and he had a lot of bruises on him. I think she didnt want me to think they were beating him down there. I assured her it was alright and this is what he is dealing with all the time. I had addressed that with her prior but I guess she didnt think it was that much of a thing until he went swimming. He was pretty tired when he got off the bus last night but he said they let him rest and chill when ever he needed it. I know he took it rather easy because he knows what it means to need rest.
Anyway We see the drs on the 24th. I am one of those who psycho analyzes everything so when they called with the appt. I was like, is that soon to be an concern or is it for enough out that the drs arent overly concerned and it maybe nothing... Yes I drive myself nuts. I do it with my own medical stuff. I have Systemic lupus, not sure if I mentioned. I guess its just a consultation and then if he wants anymore test then he will sched them.. The way his primary made it sound he would be sched for the Bone Marrow apsiration/biopsy then see them but that did not make sense seeings how I use to work in drs offices as the office manager I know it doesnt usually work that way but with cancer I was not sure.. We are not allowed to use that word in the house, hubby is not OK with it and can totally understand but if that is what it is its better to be setting yourself up that its the worst than not and having it hit hard..
thank you all again for everything.. I am sorry you all have to be here and dealing with this this your babies too.. its not an easy thing to have been dealt.. many hugs to you all and your babies
I was like, is that soon to be an concern or is it for enough out that the drs arent overly concerned and it maybe nothing... Yes I drive myself nuts.
My son was diagnosed on a Friday, his WBC was 26,000 and 3 days later it was at 36,000. ALL is fast growing and the higher the WBC the higher the risk and harder it is to get into remission. Which explains why they were in such a hurry to do chemo (doctor didn't tell us this). If you suspect ALL, I would get him in ASAP, even going into emergency. But that's just me. Good luck!
It took us months to get a diagnosis of anaplastic large cell lymphoma for my daughter. We went through many rounds of bloodwork, endoscopy, colonoscopy... they thought it was autoimmune.
There are lots of possibilities, and many are more common than cancer. But keep pushing. Get a CT scan and/or BMT, and if one is negative, push for the other. No matter what - if it does turn out to be cancer, they can treat it.
Right now, your child is sick,and you don't know what to do to get him better. They'll figure it out, and then they can start to treat whatever it is.
My daughter is now a junior in high school and a year off treatment and doing really, really well. Please keep us posted.
First off I want to thank each an everyone of you for your support and answers through this very scary time for my family.
We met with the Oncologist/Hematologist. He checked my son all out and went over the blood work. He was not alarmed by it one bit, he said its a little low but nothing that he would not expect to see in a kid who A) has a very bad virus that is still trying to recover from (but not mono) B) if he has autoimmune, like lupus or Juvenile Rheumetoid Arthritis.
So he did a bunch of blood work, to check his levels again and check for Lyme Disease, but all that came back normal, he said he will refer him to Pediatric rheumatology.
You and your children will be in me andmy families thoughts and prayers. I can't thank you enough! You are some very amaizingly strong parents who are dealing with so much. You are true inspirations! You certainly touched my life.
many hugs and lots of love to you and your children <3
thank you again
Hi - curious - did the docs do the bone marrow biopsy? Having that negative would be the best news ever!
I'm honestly not trying to alarm you, but we were told that my daughter "definitely" did not have Leukemia but that it was recovery from a virus/or auto-immune & we were referred to Rheumotology ...that was until her headaches and fatigue became so much worse that we ended up in the ER. I'm certainly praying that your son is clear & only has a virus -- but if he continues to feel badly, push for a bone marrow aspiration ....my daughters blood work was low white blood cells, high esponophils, which is not typical for Leukemia (or so we were told). I'm hoping that you son is fine - but I did want to mention if things get worse -push back ....thanks, b