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Thread: My 2 year old daughter was diagnosed Acute Lymphoblastic Leukemia

  1. #1
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    My 2 year old daughter was diagnosed Acute Lymphoblastic Leukemia

    My 2 year old daughter Bailey was diagnosed with Acute Lymphoblastic Leukemia better know as ALL on Friday 29, 2013. We were devastated to find out my 2 year old daughter had cancer, she was always very healthy. I never thought this could happen to us. We are just now finishing induction on the 31st of this month and it has been hell. It has taken a toll on her emotionally and physically. I wanted to reach out to other parents who have had there child diagnosed with this cancer to see if things do get better as treatment goes on.

    I am very new to all of this and just have some questions i would like answered from other parents who have gone through a similar experience.

    Does it get better as treatment goes on?

    How do i explain to my daughter that her hair is going to fall out?

    I feel she is emotionally depressed she doesn't like doing anything any more and just lays around all day what can i do to cheer her up?


    if any one could give me some hope that it gets better i would really appreciate it.

    thanks, Baileys Mom.

  2. #2
    Administrator Top User Didee's Avatar
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    Hello. You are experiencing every parent's worst night mare. I can't say I know how you feel but I can empathise.
    From all I have read and seen on forums since my own cancer it seems that most children respond very well to treatment and go on to lead long lives. There are also some books for parents to help discuss cancer and its affects with their kids but I do not have any links to them. I hope others may reply.I am sending a lame cyber hug from Oz.
    My thoughts are with you and your family.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User Kermica's Avatar
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    Hi Stephy136, I am sorry you have reason to be here but welcome, nonetheless. By now, I hope you have had a detailed consultation with Bailey's care team regarding her ALL. The very good news is that this cancer is in the group of childhood leukemias that have continued to show very positive trends for patients who undergo treatment. Fifty years ago, ALL was a veritable death sentence. Today, the cure rate for this illness is over 90% and continuing to improve. In fact, the past 15 years have shown continuous and marked progress so it is safe to say that Bailey should be able to go through the treatment she needs and should then be able to go on and lead a full and productive life after treatment is completed.

    The road will not be easy for you and there will be scary moments but try to take heart from the fact that the researchers, while not knowing the root cause, do know how to beat this illness back for most patients. Regarding how to relate to Bailey regarding her hair and possible depression, the best advice I can give you is to contact your daughter's care team for input, along with your local branch of the American Cancer Society. They will have educational materials for you along with others that are designed to be shared with Bailey to help her come to terms with what she is undergoing.

    Good luck with everything and I will pray for all good things for Bailey as things progress.

    Good health,

    kermica
    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.

  4. #4
    Newbie Regular User
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    Hi Stephy136,

    I'm so sorry to hear about your daughter,I promise I will pray for her.

    My sister was diagnosed with AML when she was 5,I was 6 at the time.I remember her being so sick and I remember being so scared.I remember her hair falling out and I remember being terrified that mine would fall out too.I thought that I could catch what she had.

    The nurses and staff were so good to my sister and to us, they told us that my sister was very sick and that in order for her to get better she would have to take lots and lots of medicine and would have to stay in hospital for a long time.They said that the medicine would make her very sick and that her hair would fall out but her hair would grow back and she would get better.They said that we wouldn't catch what my sister had and that our hair wouldn't fall out.We were told to love her and hug her just as we always did.

    A few years later age 10 I was diagnosed aplastic anemia which developed into AML at 13,I had a BMT at 14.Presently,I just turned 16 and the cancer is back.I know I am scared,I know my parents and sisters are scared(I can see it in their faces),I know you must be scared for your daughter but you just have to keep going and be brave and be there for her.I pray to my sister every day to help me.

    Hug your daughter really really tight and give her a huge hug.They always help me!

    Best wishes to you and Bailey,praying for all of you.

    Alyssa.

 

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