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New here; kids with cancer?

dee & beedee & bee member
in Special Needs

Hello! I am new to the bump. Husband and I are expecting a baby in November and are super excited...in trying to find out everything I can, I stumbled upon this site.  Eventhough I have an 8 and 7 year old, I feel totally lost with this pregnancy.

Anyhow, my 7 year old was diagnosed with "Langerhan's Cell Histiocytosis" at the age of 21 months. He was on chemo/steroids for 7 months and went into remission. Unfortunately, 16 months later (at the age of 3) he relapsed and we repeated the same treatment path. It will be 3 years in Jun that he will be disease free.

Are there any other parents on here with children who have similar stories?

KEEP CALM and LATCH ON!

dee & bee
mom & dad to 3 boys!
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Re: New here; kids with cancer?

  • realisticdreamsrealisticdreams member
    imagedee & bee:

    Hello! I am new to the bump. Husband and I are expecting a baby in November and are super excited...in trying to find out everything I can, I stumbled upon this site.  Eventhough I have an 8 and 7 year old, I feel totally lost with this pregnancy.

    Anyhow, my 7 year old was diagnosed with "Langerhan's Cell Histiocytosis" at the age of 21 months. He was on chemo/steroids for 7 months and went into remission. Unfortunately, 16 months later (at the age of 3) he relapsed and we repeated the same treatment path. It will be 3 years in Jun that he will be disease free.

    Are there any other parents on here with children who have similar stories?

    I follow this blog, https://www.starringscarlett.com/

    The little girl was sent home to basically die and they found a 2nd opinion and she just completed chemo.  

    The other blog that I follow, is, https://karingforkeegan.blogspot.com/

    He is one of the strongest little boys i've ever had the pleasure of reading about, and just recently passed away.   

    I'm not sure if we have any active posters whose child is currently going through chemo and/or in remission.

    If so, i'm sure they will chime in.

    Welcome to the board & good luck in your pregnancy. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • galwaygalway
    Hi.  My 21 month old was diagnosed with neuro blastoma in August at 14 months.  His story is different than your sons - his tumor was surgically removed from his chest and a bone scan and bone marrow biopsy showed it had not spread so he did not require any further treatment at that point.  He is now being closely monitored by MRI every 3 months and we are praying it does not return.   I'm sorry to hear your son had a relapse but happy he's been cancer free for several years now.  I saw one other mom on here whose child has leukemia but haven't seen any others....
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  • meghans30meghans30 member
    My DS#1 was diagnosed with LCH at 6 weeks after losing the use of his arm. We were very fortunate that we did not have to use steroids to get in in check (the biopsy seemed to get the cells to start reversing the effects). So, no advice on steroids , but wanted to chime in because it is very rare that I ever hear of another child with the disorder. 
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