Our Steven – an update

Steven

It’s almost two and half years since Steven had many hours of complicated surgery to remove the Osteosarcoma from his jaw.

It’s almost two years since he had hours of complicated surgery to repair damage caused by an infection.

Both surgeries have left him with many visible scars from where the donor tissue was taken from each time, where he had drains in and from the tracheostomy, as well as at the actual site of the surgery.

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Some of our son’s scars from head and neck surgery for Osteosarcoma

Then there are the scars inside his mouth where his new jaw was wrapped in a ‘flap’ of donor tissue. The outside of his leg became the inside of his mouth!

Steven has very few teeth left, and the ones he does have are decaying fast due to damage from radiotherapy, chemotherapy and because Steven struggles to clean them as he cannot open his mouth wide enough.

The main reasons why Steven struggles with his mouth opening are

  • Previous cancer treatment left him with limited mouth opening
  • The surgery he had to remove the cancer from his jaw has altered the mechanics of his mouth
  • The tumour had spread from his jaw into the surrounding muscle and so that muscle was also removed during surgery

The good news is that his surgical team now feel that he is strong enough to undergo more surgery to try to correct his mouth opening, and also to fill out his cheek where the muscle is missing, and they have mentioned trying to improve the appearance of his facial scar.

Steven has been given two options and he has sensibly chosen to start with the ‘easier’ of the two. The alternative is many more hours of surgery and another tracheostomy. The procedure he has decided to start with involves taking fat from his belly and putting it in his cheek.

He also needs to have dental implants to replace all the teeth which were removed with his jaw.

At present we do not know of the timings of any of this new treatment, but we do know there was a lot of information to take in and think about. We are writing this update just a few days after visiting clinic and we are still feeling the shock.

It is also very hard for us as parents, to think that the second cancer, and all the surgery needed, is a side effect of the first cancer. If you have not read the first part of Steven’s story before, you can read it here. This is one of the main reasons we campaign for better awareness. The gruelling treatment may save lives but for some children that is the beginning of a lifetime of side effects and disabilities. So, please understand that when you see that a cancer child’s hair has grown back it doesn’t always mean they’re OK now!

As always, please feel free to comment on this post or to message us privately if you would like to share your experiences of childhood cancer.

Thanks for reading,

Ziggy Zoo and Betty Too

Xx

Danielle – Neuroblastoma

Danielle, Childhood Cancer Survivor and advocate, has allowed us to share her story.

I was diagnosed with stage 4 Neuroblastoma on my mother’s 23rd birthday, January 13, 1983.

How did your diagnosis come about?

I had been walking funny, holding on to walls and furniture to maintain my balance, and falling down a lot. All toddlers walk funny, a nurse told my concerned mother at my regular checkup. It’s nothing to worry about.

… she did notice that I hyperextended one of my legs and so she thought there was something wrong with my hips. I was seen by a pediatrician and he was concerned that I might have a brain tumor, because one of my eyes was crossed. A CT [scan] ruled that out, and I was admitted to Seattle Children’s Hospital for urine collection. When my numbers came back abnormal, they used an ultrasound and found my tumor. It was attached to my right kidney, extending to my left, and partially wrapped around my aorta. There were cancer cells in my lymph nodes too. It was stage 4 neuroblastoma.

What do you know about your cancer treatment?

My treatment protocol included 2 major surgeries, chemotherapy, and some radiation. I fought every procedure when I could – I didn’t understand why these things were being done to me, why they continued to be done to me. They had to tie every inch of me down for radiation, just to get me to hold still.

Danielle was very frightened and tried to hide from the nurses…

Sometimes the nurses would come into my hospital room to find me with my favorite blanket covering every inch of my body (I figured if they couldn’t see me, they couldn’t do anything) except my head. I screamed and cried “non’t!” it was a combination of no and don’t to get my point across, but it never worked. Everybody else was bigger and stronger than me and I cried so much. Music was the only thing that seemed to soothe me. I loved Michael Jackson the most. When I lost my hair to chemo, it made me so mad I took to wearing bonnets and hats in public.

Unfortunately, Danielle suffered major complications during her treatment, which have had a lasting effect…

In May 1984, I was taken to the hospital burning up and screaming that my legs hurt. I had viral encephalitis, and because I was still getting chemo, my immune system was wiped out and I couldn’t fight it. The infection escalated and damaged my brain stem. I spent about two weeks in the ICU in a semi coma, though I would have moments where I would wake up and just cry. When asked if I wanted to be picked up and held, I would vehemently shake my head. My body was limp and the thought of being picked up when I couldn’t hold my head up terrified me.

Danielle is an advocate for Childhood Cancer Awareness, despite her ongoing health problems…

The damage to my brain stem was permanent. People look at me today and think I have cerebral palsy, and that’s fair. But I wasn’t born like this. I became like this because of childhood cancer, because nobody knew anything about treating cancer in kids back in the 1980s. Even today, they don’t treat it like they should because childhood cancer only gets less than 4% of federal funding. I was treated with made-for-adults drugs, and kids are still being treated with the same drugs. 43 children are diagnosed every day, and 7 more children die in the USA. Worldwide, those numbers only get larger, and it’s not okay! The media calls it rare, but it’s not. They just say that because it makes people feel better, to know that THAT child got it, and not theirs. I was one of those children on January 13, 1983.

Cancer changed my life in irrevocable ways. I always say, I wouldn’t wish my childhood on anyone, and I will never stop saying that. The right side of my body was affected the most by the damage from the encephalitis, and I have balance issues. I was once right handed, but now my left is my dominant hand. I have hearing loss, a speech impairment, and scoliosis due to radiation damage. At age 36, I still live with my parents. I can’t drive. I can’t work because my communication skills are limited, but I can write, and I can be a voice for the kids who have cancer today. And I am.

We would definitely recommend that you go and visit Danielle’s blog, and please tell her we sent you.

daniellecloakey

Thank you Danielle for telling us about your story. We send our very best wishes to you and we look forward to sharing more from your blog as we continue to raise awareness together.

Ziggy Zoo and Betty Too

Xx