Please take a seat and come and meet Tobias

10th May 2017 Uncategorised

As a mother I live in fear that something may happen to one of my childern and I would be powerless to help. I know that I would move heaven and earth to do whatever I could to help them and I cannot even imagine how painful it must be to watch your child suffer. Unfortunately sometimes life is cruel and the hardest conditions are placed on the smallest of shoulders to bear. In these situations though there is also hope, and strength and so much love you cannot help but look on in awe.

With this in mind, I want to introduce you to Katharine and Tobias.

So tell us about Tobias, what kind of little boy is he?

Tobias is a wonderful baby. We are so blessed to have him. He suffers a lot with the side effects of his treatment particularly with sickness, but he barely cries. The nurses who treat him say he is the only child who smiles through chemotherapy.

He brings joy to everyone who meets him- the other children on the ward love to cuddle him and he loves to play, read books, create art and play music.

Can you tell us a little bit about his condition?

Tobias has infantile fibrosarcoma- a type of childhood cancer so rare that only 50 children in the last 20 years in Europe have been diagnosed with it. He was diagnosed at 8 weeks at this point he had a tumour the size of an orange which was partially removed and he started a course of chemotherapy.

Just prior to diagnosis:

His tumour on the scan:

After diagnosis- face all puffy from crying due to so many invasive procedures:

This condition usually responds well to chemotherapy but in Tobias’s case he developed three new tumours, one of which was the size of a plum, in a three week period.

As a result Tobias then had further surgery and is now having much stronger chemotherapy. This has devastating side effects and risks including damage to his heart, bladder, fits, sickness, loss of fertility. The list is endless.

How does this affect you all day to day?

Every day we fear the loss of our son. I fear leaving him even to go to Tesco as in the back of my mind I worry that he could die and I wouldn’t be there for him.

However our days are also full of joy as he has brought so much happiness into our lives with his lovely little character.

Practically, looking after him involves feeding him via his gastrostomy, dressing changes on his central line, daily injections of GCSF to help him immune system recover from chemotherapy and regular checks of his temperature as if Tobias spikes a temperature, we have to go to hospital immediately so IV antibiotics can be administered to reduce the risk of life threatening sepsis.

We also avoid him being around other people as with his low immune system even something as minor as the common cold which you or I could fight off easily could be a serious risk to him, and viruses such as chicken pox could be life threatening.

Tobias must also wear a splint on his leg as he sustained nerve damage during the operation to remove his primary tumour rendering him unable to straighten his right leg.

Is there anything that can be done?

If Tobias relapses again he has no curative options left on the NHS so we are fundraising for immunotherapy abroad which will directly target the faulty gene mutation behind his tumour. This will not only help Tobias to achieve remission, it is also breaking new ground in the way all cancers will hopefully be treated in future. This will help other children with rare and chemotherapy resistant tumours.

What can we do to help?

Please help to raise awareness of my son’s plight by following him on Facebook @treatmentfortobias, Twitter @treatment4toby and Instagram @treatmentfortobias and help us share his story.

We would also be eternally grateful for any donation no matter how big or small. Every little helps in our goal of getting Tobias the lifesaving treatment he needs.

http://uk.virginmoneygiving.com/fund/treatment4toby