Steven – Rhabdomyosarcoma AND Osteosarcoma

Our son was first diagnosed with Rhabdomysarcoma in 2006. He was six years old. Up to that point he had been a healthy child and so the doctors initially thought he had tonsillitis. Rhabdomyosarcoma is very aggressive soft tissue cancer and was allowed to grow in his sinus cavity, unchecked, for many months. Eventually his symptoms of nasal discharge and breathing problems became so severe that he had a CT scan at our local hospital. The scan showed the “mass” attached to his soft palate. He then went to Great Ormond Street Hospital for further tests and a biopsy, and that confirmed Alveolar Rhabdomyosarcoma. Following that diagnosis he started treatment immediately, and after 12 months of chemotherapy and six weeks radiotherapy he was in remission.

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Steven during radiotherapy

In 2014 however, he had a painful lump develop on his cheek. He was still having regular checks at Great Ormond Street and being monitored for late side effects. In view of his past history, there was no delay in organising a scan. The doctors had already warned us that it was likely he had another tumour. He had a biopsy and was diagnosed with Osteosarcoma (bone cancer). Steven needed more chemotherapy and many hours of surgery before he went into remission again.

The Osteosarcoma was caused by the radiotherapy he had for the first tumour.

This is just a brief outline of our son’s story. We shall look at it in more detail later.

If you would tell us about your child’s cancer, or you are a childhood cancer survivor, please get in touch and we would be very happy to give you a feature on our blog and later on the radio channel.

Best wishes

Ziggy Zoo and Betty Too

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34 thoughts on “Steven – Rhabdomyosarcoma AND Osteosarcoma

  1. Our son Adam suffered from Rhabdomyosarkoma too. He faught for 5 years but the cancer won. He died only 17 years old but he will remain in our hearts as long as we live….

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    1. We are so sorry for your loss Camilla. Thank you so much for visiting the blog and telling us about Adam. It is so important that we keep raising awareness for all families affected by this monster. 💛

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    2. Thank you for your comment. I see Marie has already answered for us. Marie is also ‘Ziggy Zoo Radio’. I am so very sorry to read about your story and the loss of your son. I can only echo what Marie has said, in thanking you for telling us about Adam, and the need for us all to keep raising awareness of this evil disease. Our thoughts are with you.

      Best wishes,
      Ziggy

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  2. Oscar was diagnosed with Spindle Cell Embryonal Rhabdomyosarcoma in 2015, aged 9. His tumour, which developed in his jaw muscle and similarly to Stevens and went un-diagnosed and allowed to grow for months, remains inactive. His new journey is reconstructive, in an attempt at recovering his face.

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    1. Thank you Sarah for telling us about Oscar. We are so pleased that that his tumour is now inactive. We wish you and Oscar all the best with the reconstruction. If you would like to know more about Steven’s surgery in this respect, you are welcome to message us privately.

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    2. Thank you for your comment. Marie, who is also, ‘Ziggy Zoo Radio’, has commented already, I see. We wish you all well, and particularly Oscar, as he continues to live with the aftermath of the evil disease, with the reconstruction.

      Best wishes,
      Ziggy

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    3. My son had Alveolar Rhabdomyosarcoma in his right masseter muscle and parotid gland. Finished treatments two years ago. Maybe some day corrective surgery.. But Dr said had to be five years out.

      Liked by 1 person

      1. Hi Kelly. Thanks for sharing your experience. It’s great that it is now a further two years on for your son from treatment. I hope he is well now. All the best for the future.

        Ziggy

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  3. My son Isaac had stage 4 RMS just finished 43 wks of chemo and 28 days of radiation. Just got news he is NED with his petscan last week. 🙏🏼 Thank you god! And hope he REMAINS cancer free.

    Liked by 1 person

  4. My child had rhabdomyosarcoma too. Pip was diagnosed at 15 weeks old with stage 1 (thankfully) rhabdo of the vulva and urethra. Had 9 rounds of chemo but was too young for radio. She’s now 6 and 5 years post x

    Liked by 1 person

    1. Thank you Cassie for telling us about Pip. She was very young when first diagnosed and this is one of the reasons we need to raise awareness. People generally do not realise that very young babies can get cancer too. Sending you our best wishes.

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    2. So similar to our daughter, except she was 9 months old at formal diagnosis, same type, same place.. 9 rounds of IVA, no radiotherapy currently 6 months NED.. hope it continues, reading your story helps… love to you all.X

      Liked by 1 person

      1. Hi. I’m pleased that by posting our stories, it helps others who are going through similar cancer experiences. We will be posting stories about others’ experiences over the coming days and weeks too, so please keep a look out for those. If you wanted to tell your story in full detail and have it posted on the blog/Facebook, please do get in touch. I’m sure others would love to read it.

        I’m so sorry to hear about your daughter, and what she has already had to go through, at such a young age. We are with you in hoping that she continues to remain with no evidence of the disease, and we wish you all the best and love for the future.

        Ziggy

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  5. Our son was diagnosed with embryonal RMS 2 months shy of his 5th birthday. It is in his nasopharyngeal area (sinus area). He endured 7 months treatment, chemotherapy and proton beam radiation in Oklahoma City. We met brave and lovely Oscar and Sarah Hawthorne there (one of your commenters). Josh will be 2 years post treatment end of Jan. We’ve had a scare in between but are so thankful all is good cancer wise so far. The fear of relapse, as you all know is always there. He is starting to develop the nasty late side effects of treatment. What you are doing to raise awareness childhood cancer and for kinder treatments for our kids is so commendable. Thank you x

    Liked by 1 person

    1. Thank you for your comment My Linh. We do hope that Josh continues to do well off treatment and that the late side effects are not too nasty. Sometimes scary thoughts do enter our heads don’t they and yes the fear of relapse never goes away. We are so glad you think we are helping to raise awareness in a commendable way; it helps us to know that. Sending you our best wishes.

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  6. My son was diagnosed with stage 4 RMS at 16, in Nov 2014. Unfortunately after an almost 3 year fight and 2 relapses the disease got the better of him. We thought it had been diagnosed quickly as our GP and hospital consultant were great and he was diagnosed only 2 months after our initial visit to the GP, however the disease is so aggressive it was already metastatic. He was only referred to hospital as the dr thought he might have lymphoma, the rms was silent and he had no visible symptoms until his lymph nodes swelled. His primary site was his left sinus (left ethmoid sinus).

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    1. Hi Lesleyanne. Thank you for your comment. It is so sad to hear the story of your son, and of yet another rhabdomyosarcoma. Sometimes, the cancer can be very aggressive, as has seemed to have happened here. And, although we are all about raising awareness, we also appreciate that, even with a reasonably early diagnosis, it is not always possible to change the outcome. Part of our aim, in addition to raising awareness, is to raise funds into research of childhood cancers, so that our children are always given every possible chance of survival. Our thoughts are with you, and we really do appreciate you taking the time to respond to this post.

      Best wishes,
      Ziggy

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  7. Demi was 3 when she was dx with ARMS she had intense chemo and had a forequarter amputation. She is currently NED and has just turned 5. She never ceases to amaze me, she’s has had her 3metre badge for swimming and doesn’t let the fact she has one arm stop her doing anything. She’s my hero. Just hope with all my heart she never relapses. Thank you for helping raise awareness xx

    Liked by 1 person

    1. Hi Debbie. It is so difficult to see our children going through so much trauma in their young lives. It is also so good when we hear of positive stories too. I’m so pleased to read that Demi is doing great now and achieving her swimming award. That is one brave little girl you have there, and I suspect, one very proud mummy too. We can only ever hope that things continue as they are and that she has no further problems. Thank you for taking the time to comment, and we wish you all the best for the future.

      Best wishes,
      Ziggy

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  8. Our daughter Sadè was diagnosed at 9 months with Embryonal Rhabdomyosarcoma of the urethra & vagina, she had 9 rounds of IVA chemotherapy at GOSH, she is currently 6 months NED, thankfully doing well & turned 2 on Friday.. X

    Liked by 1 person

  9. Charlotte my daughter was born with Rhabdomyosarcoma of the tongue. She had the tumour removed age 5 weeks and needed 6 months of chemo. She had acute liver failure as a side effect of the chemo. She wad very lucky to stabilise and pull through she is now 5 years off treatment and doing superb xx

    Liked by 1 person

    1. Hello Rebecca. Thank you for your comment. I’m so pleased to hear that Charlotte is doing so well now, 5 years on from treatment. But, how difficult for you, your little girl, and your family, to have cancer from birth. It must have been absolutely terrifying for you all. Many people we speak with just do not understand that children can be born with cancer. The fact that we have had three mentions of it, just in a couple of days, shows only too well, that it is a shocking reality. Thank you so much for sharing, and we wish Charlotte, and you all, best wishes for the future.

      Ziggy

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  10. Our 3 yr old son Noah is mid treatment for Stage 1 Embryonal Rhabdomyosarcoma that was in his chin. He has been tolerating chemo well. He will start 20 days of radiation soon.

    Liked by 1 person

  11. Hi Karin. We are sorry to hear about your son, Noah, and his fight with cancer. I’m pleased that the chemotherapy is being tolerated, and hope that his treatment will continue to go well. Please let us know how things go with the radiation treatment too. Hopefully, Noah, will be much better soon. Take care.

    Ziggy

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  12. My daughter is currently in treatment for relapsed rhabdomyosarcoma. We found it when she was 2. It is in her nasopharynx and she had Mets in her lungs. She is on her 2nd clinical trial.

    Liked by 1 person

    1. Hi Melissa. We are so sorry to hear of yet another little one having to endure this evil disease. Our thoughts and best wishes are with you all, and we hope that this clinical trial helps. We are all very supportive here in the blog and on our Facebook page, and if you wanted to discuss things further then please do send us a message. Thank you for commenting and best wishes.

      Ziggy

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