Finley – Wilms’

Finley was diagnosed with Wilms’ Tumour (Kidney Cancer) on Friday 13th February 2015, when he was just eight months old.

His Mum, Donna told us about his early symptoms…

[Finley was] ….unsettled, agitated, vomiting, and when he cut his finger, the bleeding took longer to stop than it should have done; he just didn’t want to lay on his back. He ended up in hospital, overnight, at 4 months old, as he was crying in pain continuously. But, he was only diagnosed with reflux. He was under a consultant for a few more months for reflux, but they weren’t listening to me, even when I mentioned I thought there was a problem in his abdominal area. Finally, during a trip to A & E (due to Finley vomiting and not keeping anything down), a young doctor discovered the mass. We had an ultrasound, and then, discovered the tumour.

His treatment included chemotherapy and surgery…

Finley needed four weeks of chemo prior to surgery, then surgery to remove his left kidney and the tumour.  Then, as he was stage one, but high risk, he had 29 weeks of intensive chemotherapy, including Vincristine, Actinomycin D and Doxorubicin.

Finley is now almost two years in remission, but has some side effects from the chemotherapy and only having one kidney…

  • Finley has heart echocardiograms, because there is a small chance the Doxorubicin could have damaged his heart.
  • Possible infertility.
  • Nerve pain and other problems.
  • Can’t take ibuprofen, and has to be careful to remain hydrated due to only having one kidney.

He is doing well at the moment, but tires easily, and has stomach pains. If he catches a virus, it hits him hard.

Finley has regular scans every 3 months.

Donna added that their consultant said that often Wilms’ is symptomless, apart from the mass, but this wasn’t the case for Finley.

Thank you Donna for allowing us to share Finley’s story. We wish him and your family all the very best.

If you would like to share your experiences of childhood cancer, then please do contact us via our Facebook page, Twitter, Instagram, or use the form below:

Thanks for reading.

Ziggy Zoo and Betty Too

Xx

Tristin – Synovial Sarcoma

Mandy tells us about her son Tristin, and his amazing attitude towards his illness and recovery.

Our son Tristin, was a happy, healthy boy, who loved playing football. When Tristin was 12, he started complaining of a pain above his right knee. We took Tristin to the doctors, but it was always dismissed as growing pains. The pain in Tristin’s leg got worse, and was affecting him playing football with his friends, so my husband asked to see a different doctor.

Tristin was sent for an MRI scan, and we were then told Tristin had a cyst which could be removed if it was bothering him. Tristin had surgery in February 2017 to remove the cyst; everything went well and he was home the same day.

About 10 days after, I got a call from the hospital. They said to me that the surgeon wasn’t sure what he had removed from Tristin’s leg and they needed him back for tests, but told us not to worry. We took Tristin back for further tests in March 2017, and we were told the devastating news that our son had Synovial Sarcoma, and that it wasn’t a cyst that was removed, but in fact a tumour.

We were in complete shock; our world was turned upside down.

After much consulting, between our Doctors, and Doctors in Birmingham hospital, we were told the news that our son had only 2 options: a full leg amputation, or a Rotationplasty, which we had never heard of before. Our brave son chose Rotationplasty, as he felt this option would give him more function.

Tristin, then 14, underwent Rotationplasty surgery in June 2017, becoming the first to have it performed in Northern Ireland.

Our journey has been so tough and heartbreaking, but Tristin has been amazing. His attitude is so positive, and he is so determined to not let this hold him back. He keeps us going;

Tristin always says, “I will run and play football again someday”

There is no guarantee that Tristin’s cancer won’t return, so we take each day as it comes, and hope and pray that it doesn’t.

Thank you very much for allowing us to share Tristin’s story. We wish him and his family our very best.

Ziggy Zoo and Betty Too

Xx

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.

photo-21
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