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Thread: New here, My 5 year old is currently battling Acute Lymphoblastic Leukaemia

  1. #1
    Newbie New User
    Join Date
    Dec 2013

    New here, My 5 year old is currently battling Acute Lymphoblastic Leukaemia

    Hi there

    This is my first time posting on this (or any cancer support) forum, so here goes.

    My lovely little girl has been diagnosed with ALL, in late August 2013. It was obviously a massive & bone-rattling shock for me & my family. In an unfortunate, kind of ironic twist - I myself am a Registered Nurse - & have spent my entire nursing career (almost a decade now) working in adult's haematology & oncology ward.

    It's been unbelievably eye-opening being on 'the other side of the fence', so to speak. As I'm finding out, so many aspects of children's oncology experience are very, very different to the experience of an adult with cancer, while many others are (uncomfortably) are all too familiar. But knowledge is a double-edged sword: I know what's going on, when things are right & when things might be going wrong; but by the same token I know all those things that can go wrong (the hospital I work for is the state's largest; our Cancer Care Services division is the major cancer centre for our state-as well as parts of surrounding states & islands off the coast; basically in addition to the patients living in our cachement area - when a patient with cancer in any other of the state's hospitals become too difficult/unwell/unmanageable for them - they send them to us. Our ward deals with very, very sick people). In a nutshell - I've dealt with extreme examples of the very disease my little girl has - so it becomes really easy to drive myself nuts with worst case scenarios.

    Treatment wise, my Little One is into Interim Maintenance - but we're facing some problems there; it's meant to be every fortnight she gets admitted for high dose IV methotrexate, IV vincristine, IT methotrexate, and oral mercaptopurine (regardless of where in the fortnight she is - none on the weekends). What we're finding is that she is always way too pancytopenic to commence treatment; so treatment gets postponed for one, sometimes two weeks consistently. I'm being told by her consultant to 'not read too much into it', but, like i've said - working in cancer care, I've just seen it all go wrong too many times, & have to work hard at reminding myself that adults & children's oncology are worlds apart.

    Sorry for the long introduction, but that's our story so far, thanks for reading.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Hi Rose and welcome though I am very sorry to hear of the reason that you find need to be here. I am just posting back to say hello and to let you know that we are here and listening. Unfortunately, the Childhood Forum is not a very active one (should I say fortunately, instead) which is why your post aged for a few days without a response.

    I don't have a comment regarding your daughter's treatment schedule as I have no actual experience with ALL or childhood cancers. I wish you the best and, regarding the consultant who is saying "don't read too much into it", my position is that the professionals need to be honest with the caregivers - always. If you are feeling you are not getting facts, my position would be to press for more definition as you are the guardian of your daughter's health, first and foremost.

    Good luck to her (and to you) in this fight. It is my hope that all goes well and she beats this back to a full recovery soon.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.


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