Treatment For Tobias

If anyone could take the time to send Dion a card for his birthday, he and his Mum would be so grateful ūüíú

Tobias is feeling lots better. Here are some pictures of our beautiful morning together. Now he is fast asleep and we are looking forward to seeing his Nana and Uncle this afternoon. We hope everyone has a fantastic weekend. Thanks for all the love and support this week! ūüíô

Little man has had a tough day but he’s been so brave. The minute I picked him up in recovery he stopped crying and retching and he hasn’t cried ever since! He’s been asleep most of the day so his pH test is now 6 hours and still going strong.. 18 hours to go!
Hopefully we will be able to get some answers as to why he is still vomiting so much following today’s General Anaesthetic, endoscopy and biopsies.

Darling Tobias is still in remission!! There couldn’t be a better birthday present for Mummy this weekend! His ultrasound looked good, his oncology consultant is happy with him from an oncology perspective.
He is still having issues with food and having had a lot of colds and chest infections over the winter has gone back to being sick at the sight of food poor soul. He is currently off his reflux meds as he is having a general anaesthetic and a scope put down and then a 24 ...hour pH test put in next Tuesday. Not sure how long the pH test is going to last .. I will be purchasing some long socks this weekend! His reflux is worse as a result but his eczema has completely cleared up! I discovered there is lactose in his reflux meds so we will have to change it when he goes back on them next week.
He has been assessed by SALT to have a communication and language delay. They are going to refer him to portage, the community paediatrician to assess his development and put some support in place as needed.
He is super brilliant and we love him to pieces. Here are some pictures and videos of his life in the last few weeks.
All our love ūüíô
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This little ray of sunshine is enough to brighten anyone‚Äôs weekend! Hope these videos make you smile. He definitely has the Duncan family dancing genes ūüėÜ

We are making some headway with eating! Tobias has lately become much more interested in food particularly the food that we and his friends are eating.
He started by licking the odd bit of our food, more recently he has started occasionally putting food in his mouth and sucking on it (he mainly likes chocolate but as long as we can show his that food is not the enemy then we can work on a healthy diet in time!).
We are feeling very proud and happy so we wanted to share our joy with all of you! ūüíôūüéó

Little man trying to flush his own gastrostomy ūüíôūüéó

Today is the anniversary of Tobias’ relapse. At the time he had relapsed whilst on chemotherapy with a tumour almost as big as the first one which had been removed only 2 months earlier. He was 4.5 months old and he had already been through so much. I had absolutely no hope for the future, had been told it was likely his tumour wasn’t sensitive to chemo and was in absolute despair.
More recently I have started to be able to look past his illness into his future. We are able ...to think about his schooling, what sports he might like to pursue, whether he might be into music..
We saw one of the Gastroenterology consultants on Friday who said that due to his ongoing vomiting he needs a number of tests, some of which will be under General Anaesthetic to biopsy his GI tract, and some inpatient to monitor his vomiting. He will need a pH test and a Barium meal also. Hopefully these things will give us an idea of the cause behind his vomiting and if the prolonged nature of it has done any harm to his oesophagus and stomach. We are a little disappointed as we had hoped for a break from invasive procedures for a bit after his oncologist said he no longer needed MRI’s, just ultrasounds which don’t require a GA. However it has to be done.
I believe that a lot of his vomiting and reflux is allergic in nature as it has improved since he started on neocate which is hypoallergenic with no cows milk protein. Interestingly we also changed his toothpaste last week which seems to have improved things also, although it may just be coincidence. The Gastro consultant said if it is reflux then he should grow out of it aged 3-5 as the bigger you are the less easy it becomes to vomit. Not so sure about the allergic part, but he has been referred to see immunology for this.
Tobias, as ever, is unphased by everything. We went to visit ward 84 before the appointment to see the nurses and staff who were seriously impressed by his hair (although they asked where his black curls had gone!), and even more impressed by his walking! He also went to visit Gracie’s brand new little brother Flynn. He was absolutely in love and so gentle with baby Flynn. Flynn has a very special big sister Gracie who is an angel of ward 84. Hugely loved and missed by everyone who knew her.
Hope you are all having a fantastic weekend and we will keep you updated with Tobias’ progress in this next chapter!
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This week is feeding tube awareness week. Tobias first got a feeding tube when he was diagnosed at 8 weeks old. Initially he had an NG tube which goes up one nostril and down into the stomach. He used to pull it out with great frequency. He used to sweat or rub the duoderm tape off too. I can’t explain how traumatic he found having the ng tube passed. We had to swaddle him and then pin him down for a nurse to pass the tube. He would scream himself absolutely rigid.
Unfortuna...
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We can’t believe how far Tobias has come. He is walking fabulously although in a more wobbly manner than the regular toddler. Because of this his physio wants to continue to see him.
His vomiting had improved on his new feed but for the last month he’s had a constant upset tummy and his vomiting seems to be slowly worsening again including huge projectile vomits overnight while he’s half asleep (and we are too so we keep missing the bowl and hitting the bed!). He had started... licking the odd piece of food but seems to have backtracked on that too! SALT say it will be a long slow road towards eating. The expectation is that he will still have a tube when he goes to school .. anything bits of food that he may be eating by then will be a bonus!
Overall we are just completely over the moon with how well he is doing and can‚Äôt believe our luck. We take each day at a time and try not to think about future issues. Tobias is confident, smiley and happy and has totally changed our perspective on what is important in life ūüíôūüéó
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This little warrior is officially 6 months NED!! I bumped into his consultant in the corridor after his physio, Dietician and SALT appointment today!
Next scan in 6 weeks time! So grateful, proud and pleased! Thanks for all the love, support and prayers you surround our sweetheart with!
‚ô•ÔłŹ‚ô•ÔłŹ‚ô•ÔłŹ‚ô•ÔłŹ‚ô•ÔłŹ‚ô•ÔłŹ‚ô•Ôł Ź‚ô•ÔłŹ

Tobias had his MRI scan under General anaesthetic last Monday. We asked the Anaesthetist to give him some pain relief this time as the tube they use to intubate him hurts his tender throat otherwise. He was much much less distressed after the procedure as a result although he still spent a bit of time looking at his cannula like Macbeth until the nurses removed it.
We won’t get the results until we see his oncologist in clinic in two weeks time.. but we are guessing no news ...is good news. Next week we see SALT, physio and his Dietician.
Tobias will pretend to drink water out of a sippy cup and occasionally pour some in his mouth then spit it out. He has started licking some foods that don’t taste of anything eg. Apricot skin and I offer him everything I eat so sometimes he will lick the odd thing (although he vomits if it tastes of too much). Slow progress but it’s all going in the right direction. We hope the physio will be impressed with his excellent walking. His vomiting has improved with neocate aswell so he must be cows milk protein allergic as well as all of the additives he is allergic to!
I gave blood last week and felt rather rotten for a day which made me feel so sad thinking of how Tobias and his friends must have felt for long periods of time. I hope it makes the person it goes to feel much better.
All our love to you all ‚ô•ÔłŹ
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A massive Happy Birthday to Tobias’ saint of a Nana who has been our absolute rock throughout Toby’s illness and beyond.
We love you so much and can not express our gratitude to you enough for all of your support and love without which we would not have been able to stay by Toby’s side every second of his ordeal.
I’m sorry we were unable to see you on your Birthday (poorly Grandad and Tobias has his MRI under GA on Monday so we can’t risk him getting sick). We will make it up... to you when we do!
Grandparents of children with cancer have such a tough job. We have been so blessed with ours. 2018 is going to be a great year for us all I can just tell!
With all our love,
Katharine, Tobias and Isaac ‚ô•ÔłŹūüíě‚ô•ÔłŹ
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Here‚Äôs to a happier, healthier and hairier 2018 ūüíôūü§ěūüŹľūüéó

This time last year Tobias was 3 months old and had already had 3 surgeries, more injections and blood draws than most people have in their life time, lots of traumatic feeding tube insertions and he had just started chemotherapy with all of the severe sickness, hair loss and suffering which comes along with that. Now he is 15 months old and the funniest, kindest, most loving little man ‚ô•ÔłŹ
He has battled everything with a huge smile on his face and we are so proud of him. We are delighted to be going into 2018 with him still in remission. We didn’t even think that this was possible when he relapsed on treatment this year. We are hoping that the new year will bring continued happiness and health for Tobias and for all of his wonderful, loving supporters.
Thank you all ūüíô

PLEASE LIKE AND SHARE - Tobias needs your help!
This is his story...
Tobias was born 28th September 2016. 7lb 6oz.. a bouncing, beautiful, healthy baby boy.. or so we thought.
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We love you brave boy! ūüéóÔŅĹ!

Your amazing and strong xxx

I'm not sure that five stars saying 'I loved it' is really appropriate. What we felt in the dental surgery this afternoon was sadness and a sense of helplessness until we found they were campaigning to raise funds to get this little soul the treatment that might save him. So of course we contributed and will do again no doubt, on our next dental visit. It's all we could do. We wish it were more. Xxxx