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Dear Anjolie,
Firstly, I thankyou for your kind and understanding words, even though you are a total stranger, it means alot, so sincere thanks.
Now, lets get down to the nitty gritty of your little boy, at least I know our diagnosis, I can get on with the job and challenge at hand, not knowing for such a long period of time would drive me insane. You need to dictate to these doctors as I feel a diagnosis is way overdue.
There are 2 types of childhood leukaemia ALL & AML they are both acute, our bodies are made up of 2 systems our lymphoblastic system and our myeloid system, hence the L & M, it is just a case of which system the blast cells are attacking, this can only be determined by way of a bone marrow aspirate taken from the hip of the child, also a lumbar puncture taken from the spinal fluid, which is the central nervous system that circulates around the brain, fortunately we had blast cells only in the marrow, we are classed as standard risk, therefore the treatment protocol is slightly shorter than that of a patient with cells in both marrow and central nervous system, classed as high risk. Both ALL & AML can be in marrow and CNS, standard risk means a lower rate of relapse after treatment ceases, high risk means relapse rates are more likely after treatment ceases. ALL is not as aggressive as AML, ALL treatment is a 2 year protocol, ours is longer due to complications suffered in the first few months of treatment. AML is only a 6 mth treatment protocol with heavier chemo, and the relapse rate is extremely high, leaving only one option for survival, bone marrow transplant, with only a 25% chance of coming through it, AML is nasty! Your little boy definately has a blood disorder of some type it could also be Aplastic aneamia, which also requires chemo or transplant. It could also be a solid cancer tumour affecting his bloods, in this case he needs a full body M.R.I scan to determine the region of the growth. My little girl presented with an ear infection, had antibiotics, it fixed the ear infection, but became tired, lacking appetite, very pale, spiking temperatures on & off, slight nausea, petechiae on hands, she was diagnosed with ALL on our second visit to our GP, I simply demanded a full blood count on that dreaded morning and were called at 6pm that night. It was a case of, pack your bags, your daughter has leukaemia, the Royal Brisbane Hospitals emergency Dept: is waiting for you, go now! Further testing will determine which leukaemia she has. It was a terrible night,stormy, upset with a 4 hour drive ahead of us, we managed to lay down by 4am the next morning after all the tests, they definately did'nt stuff about! this all occurred over a 4 week period.
All the kids are expected to be in remission within the first 5 weeks of treatment, if they don't, relapse rate is higher, they have also discovered if certain children have a particular chromozone, they are also high risk of relapse. Your son has petechiae, which means low platelets, bruising does not mean much, our daughter had no bruising, avoid flu shots as this is the actual germ being injected into there system, it will cause problems as he has hardly no immune system, all childhood immunisation shots avoid, as this could give him the germ, neutrophils are our infection fighting cells, when you are immune suppressed you have next to non of these neutrophils, therefore the body cannot combat the bacteria in these immunisations, as a healthy immune system will just kick its butt!
So in closing "no ongoing monitoring" act now! Demand a bone marrow aspirate and a lumbar puncture, this is the only way to set your mind at ease.
If that does not bring results a full M.R.I body scan is in order. These 3 procedures will bring results of some sort.
I feel we have gotten this far by firmly, but nicely insisting certain procedures be preformed, if I had not, our little girl would not be here today, doctors are only human and do not have all the answers, and we know our children better than them, we are there only advocate if we do not stand up for them who will, they are not as important to the doctors as they are to us!
I so wish you the best, and hope you find the answers you are looking for, my info probably is a touch daunting, but factual, keep in touch.

Fingers crossed for you

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