rhabdomyosarcoma survivor

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  • Sarahbear12
    Sarahbear12 Member Posts: 7
    PaulLD said:

    rhabdomyosarcoma survivor
    Hi,

    We have recently had the news that a friend of ours has been diagnosed with Rhabdo (she is also 5 years old).

    Your comment is very promising. Can I ask is there anything you feel friends could do to help apart from just "being there".

    I appreciate any help or advice you can offer so we can help and support our friends as much as possible.

    Being a friend & there for parents & child diagnosed with cancer

    hi paulld my name is Julie Richardson my daughter Sarah was diagnosed with rhabdo @ age 4 in dec89 she passed in feb12 - but here r some tips - when parents find themselves & their child entering this journey its very very scary to parents so being there in the beginning is wonderful they need hugs & love later on as the protocol (what they (drs) call the length of time child will be undergoing treatment ) usually the primary caregiver is going to want to talk about what all has been going on & it's not always a real pretty conversation to hear but they need to vent to someone if that happens to be u just listen they feel helpless & flustrated & they r likely making very hard decisions abt the care of their child.  If this family has other children u might want to offer to watch them or set up a network 

  • Sarahbear12
    Sarahbear12 Member Posts: 7
    edited July 2016 #43
    PaulLD said:

    rhabdomyosarcoma survivor
    Hi,

    We have recently had the news that a friend of ours has been diagnosed with Rhabdo (she is also 5 years old).

    Your comment is very promising. Can I ask is there anything you feel friends could do to help apart from just "being there".

    I appreciate any help or advice you can offer so we can help and support our friends as much as possible.

    Julie back ran out of room

    so amongts the families friends to sit - the way it was for us was a wk of chemo then home then spike a temp & back to hosp we had to go often in the middle of night w/o advanced noticed -like on call baby sitter do not take lots of food to hosp room b/c child wants to eat it too but might not keep it down chemo makes u nauseus /I had a lot of my friends & I know they meant well but they would ask ' do u think Sarah going to die from this cancer?' Please never ask that b/c really it is at the top of parents mind 24/7 Sarah cancer tumor gone in3 mo we had her for 22 yrs more so no one knows let parents know as young as child is to stay with child in hosp the whole time they r in get them some big spiral notebooks & pens pencils so parents can write down what med child is getting how much how often that & take it every time they know but they going to ask parent for history of child's illness that way parent can just rattle it off & parents need a break so another good thing is to go sit with child so parent can get out & recharge at the hosp we lived in a small town but someone made posters & set jars out
    & for u wanting to know more about what to do just listen listen & love Julie

  • Sarahbear12
    Sarahbear12 Member Posts: 7

    granddaughter with same sarmona as yours--please write back!
    We have a 20 year old granddaughter who was recently diagnosed with rhabdomyia sarcoma---she is taking chemo at barnes jewish in st louis and we need all the support we can get---hers started in pelvic area and she has in her tongue and spine---please write back--thanks

    Being grandma to a granddaughter with cancer
    Hi stinkerthecat - u must be a cat person too my name is Julie & my only daughter diagnosed with rhabdomyosarcoma at age 4 in dec89 Sarah my daughter was diagnosed stage 4 abdominal tumor from one side of pelvic to other & then 2 more rumors in the chest area - she passed in feb12 we had her for 22 yrs after diagnosis but they r coming up with new stuff all the time her parents probably frantic & she probably is too but your job let grandma is to be the grandma do stuff with her that maybe she wouldn't usually do that's what my mom did but if u r the caregiver - the one taking her to hosp & stuff then get a big spiral notebook one for her too decorate it make it fun but inside write down every single thing she does every med when what dose. During radiation make sure u have her platelet count checked radiation can drop platelet count to point where a blood transfusion is necessary / and for that reason rollar blading is out of the question -my Sarah use to give the nurses fits racing around on her Iv pole lol one day at a time darling one day at a time let me know if I help answer more questions love & prayers Julie & Sarah
  • Sarahbear12
    Sarahbear12 Member Posts: 7
    Hi dashw
    Hi dashw this is Julie been down that road & I'm so glad to know that ur child doing so much better my daughter Sarah was diagnosed with rhabdomyosarcoma in dec89 when she was 4 sadly though her heart gave out at age 26 in feb12 but I'm anxious to see how things r going with ur child we started ifosimide in 89 it was brand new back then & Sarah's 3 rumors were gone in 4 mo but yea u still have to go on to end of the protocol god forbid it rears it's ugly head again / we use to sing that Ray Charles song hit the road jack - jack being the cancer it was our theme song we lived in Dallas tx & they organized a parent conference once a year where parents could go & talk to other parents going thru the same thing ck & see if they have that in your area it's so nice to be surrounded by people who know what ur talking about when u say we accessed our portacath our friends love us but they just don't get it and I don't want them to have to find out either love & prayers Julie & sarah
  • Sarahbear12
    Sarahbear12 Member Posts: 7
    ty said:

    rhabdo
    Hi Byrd Just reading all the comments on this site. My grand daughter (who I raise) was just diagnosed with alveolar rhabdo in January. She was 15 and just turned 16. She has finished 29 radiation treatments and is on week 15 of 42 very harsh chemo treatments. It has been hell on her. Her body is ravaged and she is so very weak. Your story gives me hope. Her tumor was in her sinus cavity, size of a golf ball and pushed on her right optic nerve leaving her blind in her right eye. She has been through so much already and we have such a long way yet to go.

    Ty
    One step at a time my darlings one step at a time my daughter Sarah had rhabdomyosarcoma stage 4 at age 4 we use to sing Ray Charles song hit the road jack - jack being the cancer it was our theme song later Sarah got to meet Ray Charles in person u never know / love & prayers Julie & sarah
  • Sarahbear12
    Sarahbear12 Member Posts: 7
    nitti910 said:

    Hi,

     

    My cousin has being diagonized with rhabdomyosarcoma October 2014. He has being going through chemo for last one year. His tumor shrinked a lot from initial diagonosis, until last night we found it has got bigger in size again. He is in Canada  rigth now. We are looking for a better place for his treatment. Please share your experience and suggestions on best treatment center.

     

    Thank you,

    Pretty.

     

    Hi nitti910
    Hi pretty this is Julie when my daughter Sarah diagnosed with rhabdomyosarcoma in dec89 we were at children's medical center in Dallas tx we had some wonderful oncologists Suport staff I can't promise anything but if u contact children's in Dallas ask for dr bob bash he's great t u can tell him we sent u or u might check with st Jude's in Memphis tn love & prayers Julie & sarah
  • Sarahbear12
    Sarahbear12 Member Posts: 7

    Questions
    My grandson was recently - last week- diagnosed with rhabdomyosarcoma. He has had his first chemo. It is supposed to be a 42 week treatment plan. How was your daughter during this? How is she now? Does she do all the activities like her playmates? So many questions, I am sorry. We just want to know as much about what to expect as we can.

    Hi janetp1980
    Hi my name is Julie & my daughter Sarah was diagnosed with rhabdomyosarcoma stage 4 in dec89 by Christmas her hair had completely fallen out we all just gulped to ourselves & went on abt the day how old is grandson my Sarah was 4 so she was in daycare & of course her playmates were concerned so I went up there to her daycare & that age group doesn't get what cancer is so my explanation is that in the body there r good cells & bad cells the good cells fight the bad cells away & keep us healthy but with Sarah some of the. Bad cells got thru , grouped up & formed a mass which is what is making Sarah sick the medicine will break up the group of bad cells & leave the good cells - something like that but the playmates need to understand it's different now @ least while he's on chemo chemo depletes platelets ( the blood cells that clot) if u don't have enough then rollar skating & falling down could cause a prob like bruising & he wld need to go to er right away so rough sports not for awile or activities where he might likely fall & get injured -how do u know if the platelets r down ? U don't unless he has a blood test & if so then dr may order a blood transfusion - so when do u get this blood work done? Well whenever ur in the clinic or in an er they going to ck that right off u don't have to treat him like glass but just mind his activities I mean let him run & stuff just watch that / after chemo usually what happened to us was we would be home a wk -maybe then Sarah would spike a temp & BAMM ur off to er b/c chemo also makes immuinsuppressed yaa- what I mean is every germ on planet will stick like glue - sortof u have to go to er when temp spikes b/c it could get worse & he needs antibiotics Iv & u might be there another week & u may find yourself having to go at any time of day or night to hosp with those fever spikes so keep go bags handy with change of clothes all ur notes on everything he been doing so far - trust me nursing staff not digging out the records so get notebook - keep track of what he took how much when what happened & they will ask for the history every single time u show up even though u will feel like - geez don't they like know? Yea they do but they want to hear it so write it down who his dr is blood transfusions how many ? When? That kind of stuff - my daughter pretty much just took it in stride we got use to backing the uhaul up to hosp door every time we went I'm guessing ur grandson has a portacath that's something they plant under the skin they use it to access to give chemo & draw blood & transfuse blood he gets to take bath shower swim no prob no hot tubs the heat of tub will heat metal disc underneath skin when Sarah's got hers out she it to school for show & tell after 4 mo of chemo all 3 rumors were gone but we had to finish the protocol b/c god forbid it comes back / when radiation time rolls around really make sure he is having weekly labs to ck those platelets there is no chemo during radiation time we had 6 wks of radiation twice a day for 5 days so he may not be necessarily seen in the clinic but ck those labs radiation will drop platelets whew that's probably a lot for u right now but let me know if I can be more help loves & prayers Julie & Sarah
  • SaraHossam
    SaraHossam Member Posts: 1
    Mobjack said:

    Childhood Rhabdo Survivor Checking In

    Hello Ps34, and others.  I too was diagnosed with stage 4 rhabdomyosarcoma when I was 12.  That was in 1976, and I will turn 52 this year, 2014.  I am new to this site, and new to the world of cancer survivors groups in general.  Once I was deemed to be cured of the cancer, and then had made it through a couple of big hurdles with abdominal adhesions just a couple of years later, I was ready to put the label of ‘the sick kid’ behind me for good.  So by the time I graduated high school, I felt like any normal college Freshman.  After having lived as a sick person for several years, I was anxious to put that part of my life into a little compartment and forget about it for a good, long while. 

      When I was first diagnosed, my parents were told there was little chance of me seeing my 13th birthday.  Very fortunately for me, there was a new and promising study being carried out at the Medical College of Virginia in Richmond, only an hour from my childhood home in Williamsburg!  After my parents decided their only choice was to enroll me in this study group, we all went into treatment with eyes wide open, knowing that there were no guarantees for a cure, and that the path of treatment was going to be challenging.  Obviously I survived, and I remember being told what to expect as my life progressed.   I have recollections (which my mother says she does not recall) of hearing doctors say at some later point in life, possible 15-20 years later, that a likely long-term result of my treatment might be a secondary cancer, brought on by the high doses of radiation that I received during my treatment, and that there may be some digestive problems due to the fact that my abdomen was the area that was irradiated, as well as the area where the major surgeries had taken place.  But as a young and seemingly healthy man of 19, that seemed indeed a lifetime away, and certainly not something to worry about at the time.  As much as I wanted to just be a "normal guy", I never took for granted the second chance I had been given, and I certainly lived most days from then on out as if they were my last. I had gained an innate understanding of the complexity and fragility of the human organism, and just how very much could go terribly wrong simply by living out our daily lives.

    A little over a year ago, I was diagnosed with Chronic Radiation Enteritis.  The last year has been quite a challenge.  I am willing to go into detail with anyone interested; and by the same token, would be thrilled to hear from anyone else in a similar situation.  I have stories galore, and I love telling them! (I was a classroom teacher for 25 years)   I love to hear other's stories, or simply their experiences of the ups and downs of life after cancer, would love to compare notes, and have tried lots of different kinds of remedies and therapies as I have come across them, with varying levels of success.

    As one of the other above comments also stated, I am not familiar enough with this overall sight to know exactly the best place to post this sort of info, or indeed if it is even appropriate for this sight.  But I imagine that it is, seeing as this seems to be a gathering place for people to offer support to one another, which would be the main purpose of my story-telling (besides a bit of comic-relief because I am a bit of a nut as I make my way through this crazy life, irrespective of my health conditions at any given time).   

    I am replying to Ps34 because of the similarity of your son’s situation to my own, but perhaps a response from a staffer would also be appreciated, as it does not seem that this particular thread is accessed all that often.  Thanks in advance to any and all that read this and have suggestions!

    Hi Mobjack, thanks for

    Hi Mobjack, thanks for telling ur story, my cousin 45 years old he is suffering from this rhabdomyosarcoma, now he is in stage 4 and all doctors are saying the chances for survival is very low , even doctors are saying no need to continue the chemo therapy as the cancer is growing and now it is affecting the kidney and lever and now he is in ICU, we hope he will get back soon from ICU, but I wanna know more from u regarding the study u went through and what was the treatment in more details ... ur feedback is really appreciated, thanks alot and thanks for all who shared their stories as it is really helpful and bring us hope

  • Jeannieco
    Jeannieco Member Posts: 2
    edited September 2016 #50
    Please if u see this call  at

    Please if u see this call  at 267-254-2520. My son has it too having a tough time!

  • Foodtabulous 1
    Foodtabulous 1 Member Posts: 1 Member
    Judy512 said:

    Similar timing with having rhabdo

    Hi Tim,

    I've been browsing this site for connections with childhood cancer survivors and those with ongoing heath issues that were a product of radiation treatment.

    I too was diagnosed 38 years ago at 17.  My rhabdo covered the entire left side of my face and due to the nature of radiation in the 70s, I ended up with loss of sight in my left eye, loss of hearing in my left ear, permanent baldness on my left scalp, trismus and more.

    I've had 20+ reconstructive surgeries, including a condylectomy to offer a larger opening in my mouth as my jaw was fused from radiation.  I consider myself a treatment warrior since I just keep moving on despite my changed face and facial paralysis.  None of this has interfered with my career or social life.  I've only encountered frustration since I was blindsighted by all the health issues that kept popping up & were never shared (or discussed as risk) when I was diagnosed.

    I would be very interested to know how you fared with treatment and after-cancer quality-of-life issues.  I'm trying to compile best refererces for those I come in contact with.  You can visit my blog: judyryan.wordpress.com.

    Thank you!

    Judy

     

     

     

    Rhabdo Survivor

    Hello Judy,

    My name is Angela, I am 48 and a 41yr survivor. I battled from ages 5-7yrs.  I had a tumor in my left nostril area and on my left thyroid gland. (I'm also new here on CSN so please bare with me. I dont know WHY it took me so long to even THINK to go to the internet for help.) I am also a retired Chef as of 2011 and that may play a role in why. I lived MOST of my life "on the fly". Lol But in all I've been thru, I too started noticing changes. More so with age but had NO IDEA I'd have to retire at the age of 41 because of side effects that were not mentioned along my lifes journey. I recall a social worker of some kind that would come visit our home, from Chicago, where I was born and had my treatments(I now reside in Michigan), about once every few yrs, as a study on how to better serve and treat suvivors of the cancer. They would ask questions about how I felt, they would do a minor chk up, paid my parents a fee and that was about it. We weren't told any specifics on what to do or NOT. The doctors only told my parents after they saw I was cancer free for a yr, is that I possibly wouldn't live past 14 and if I did, I wouldn't have any children.Well, I beat those odds in more ways than 2!!:-)  I am a mother of 3 BEAUTIFUL daughters and 7 FABULOUS Grands that I'm "Nana" to and couldn't be more happier they exsist!!:-) I could go on for DAYS about them but "we ain't got time for that" LOL....I'm just pretty much looking for someone that has had similar "post" issues. I suffer with chronic pain from head to toe. Rheumatoid Arthritis, Fibromialgia, severe scoliosis, bone and tissue issues, chronic allergies... just to name a few. As mentioned before, I've had a pretty active life and partly also because of an underactive or overactive thyroid(can't remember which). The 1st was removed from the left thyroid back in 74'....I'll now, I guess I'll let open the floor to you to ask any questions if you have any. I'm not too computer saavy so when I hve 1 of my grandsons show me, I'll load my picture. I'm using his laptop so I may not get back to you right away. I do want you to know that I'm glad you shared your story.