Oisin’s Story

This is our story of how we learned Oisin had a brain tumour…

September has always been a memorable month. Barry and I got married in September. Our youngest boy, Cillian, has his birthday in September (he has just turned two and is emerging as a fiesty, funny and chatty little boy) Forever in our memories now will be the day we were told that Oisin had a brain tumour,  30th September 2014.

We had a lovely summer, soaking up an unusually sunny Irish summer. August was spent with the family in Dingle, a place that Barry and I have come to adore and is where we got married. Even then there were some signs that Oisin, in a very subtle way, seemed to have lost a bit of his usual spark. Little things like having his photo taken. He just didn’t seem to want to smile as much. He was starting to have tantrums, something we had got away with very lightly during the “terrible two’s.”

It was when Oisin started his new pre-school in September that we really started to see changes in him. We put it down to the transition to pre-school. He found pre-school difficult from day one. Some tears are normal, of course, so we didn’t think it too unusual for a sensitive and emotional boy like Oisin to be so anxious. He developed a little coping mechanism of constantly wiping his face. Again, we thought he was trying to sooth himself because he was anxious about school and missing his mummy and daddy. He had been trying to drop his day time nap for a while but just wasn’t managing it. Then when pre-school came, he became so tired that we wondered whether we were just exhausting him by sending him off to school each morning. He started to walk around as if he was drunk. He constantly seemed to look “spaced out.” Next to the other kids around where we live, he just didn’t seem to be walking right. I remember feeling sad when I watched him trying to keep up with a school friend he had just made. It was a very fleeting thought. I recall seeing him drooling occasionally and thinking to myself, ” That’s strange. He can’t be teething any more can he?”At home he seemed to be playing more on his own and was getting frustrated by Cillian’s attempts to try and play with him. His face seemed a little lop sided at times, particularly when he was stressed. His temper had shortened and he was starting to hit and kick as if frustrated by something that he couldn’t really communicate to us.

Oisin’s beloved Granny and Grandad Boland had just returned from a trip of a life time to America. We went up to visit them on the farm in Kildare for the weekend. Not long after arriving, Granny (my husband Barry’s mum) came to me with tears in her eyes, “Is he ok, Sheila? He just doesn’t seem the same boy.” Grandad thought his “spark had gone.” Alarmed by their comments, Barry and I started to reflect on the change in Oisin and decided it was time to check out any medical reason for the changes. We took him to a pediatric consultant. At this point we thought it may be an ear infection causing his problems with balance. The consultant recommended an MRI scan and bloods. He wondered if it was an infection like Encephalitis. We went to Crumlin Hospital in Dublin straight after. On the way home Oisin suddenly went silent. He curled up in his car seat and stared blankly. We called his name and he didn’t respond. It only lasted a few seconds but it was enough for us to phone Barry’s brother, Brendan, who is also a G.P. On his advice we returned to Crumlin and they decided to keep him in overnight for observation. They seemed concerned by some of their visual checks around his balance, but reassured us that his blood test results form earlier that day had all come back as normal. They booked him in for a CT Scan the next morning. Later that day the consultant took us into a room. The whole team was with her and she had us sit down. Very quickly she told us that Oisin had a brain tumour. It was at that moment that everything in our lives shattered, my heart started breaking piece by piece, and things started to move at an overwhelmingly fast pace.

An MRI scan followed the next day. Oisin had to be under anesthetic for this. The MRI gave a more detailed look at Oisin’s brain. That evening a different consultant, a very kind and warm man, took us into a room again. The scan confirmed a tumour that was growing on Oisin’s brain stem. At that point he was quite certain it was a type of tumour that only occurs in children called a Diffuse Intrinsic Pontine Glioma (DIPG). I was still hoping that there could be treatment and very quickly I asked him that question. He told me that Oisin would not survive this type of tumour. It is one of the very few tumours that has up to now, not responded to any treatment with a cure. Radiotherapy can buy a few more months, if a parent wishes to take that option. We saw Oisin’s scan. The tumour was a shocking size. It was incredibly difficult to see the MRI, knowing it was out little boy, but both Barry and I requested to see it. I couldn’t believe how well Oisin was in so many other ways, given the size of the tumour I saw that night on the scan. I will never forget that image.

Oisin was transferred to the Neurosurgical team in Temple Street Hospital, Dublin, where he had a biopsy. The biopsy is a procedure to remove some cells from the tumour so that they can be tested and used to confirm diagnosis. The cells also add to research data. Barry is a scientist and was also keen for the cells to be used to contribute to research , as so little is known about DIPG due to little funding.

Overall, the biopsy went as well as it could go. Oisin has recovered and is now out of hospital. We have decided not to do any more with regards treatment. We want him at home. No more procedures. We are getting by. We have no choice. I have found my strength within me somehow and family and friends have been amazing. I decided to start this blog to help others in our situation and to be a place where we can build a community around Oisin. We have one goal in mind right now. We want to make each and every day beautiful for Oisin. We want to make his final weeks count. We want him to put into his short life, a whole life.

Thank you for reading this. I hope it might help in some way. It helps me to share it. xxx


65 Responses to Oisin’s Story

  1. MARY says:

    thanks for sharing oisin with us .ill think of.you with love and kindness.you are so brave.
    hope you can find some ease in these difficult weeks.


  2. Deirdre Clarke says:

    Hi Sheila and Barry

    Deirdre Clarke here, daughter of Anne McNeill, Joan’s friend. My heart is just breaking for you all. We only heard the news about Oisin yesterday. I am praying to a very special saint who is due to perform another miracle, Blessed John Henry Newman. You are very brave and couragous to share your journey online, I am glad I could make contact with you. Oisin will be foremost in my thoughts and prayers.

    Love Deirdre x


  3. Ronan Ginty says:

    I’m so sorry to hear of this news. Barry was one of my lecturers at UCC earlier this year. I only saw the URL for your blog on Barry’s automatic email reply. Ironically, it was an email I sent to Barry about an idea I had with regards to neurological research/treatments. I feel so sad in reading your blog now. Please feel free to call me at any time if you need anything. Regards, Ronan Ginty (085) 7368 007 (Ballincollig, Cork)


  4. Helen Maher says:

    Barry, Sheila
    I just wanted to share that you, and your boys, are in my thoughts and prayers at this difficult time. Barry, I remember you telling me all about Oisin the last time I met you, and I can see from your blog what a beautiful boy he is! Words fail me but I am so struck by your courage, and I wish you both continued strength in the coming months. With Love from Dallas, Texas


  5. Mona & Manal says:

    Dear Dr. Barry and Sheila

    We will be PhD students at Dr. Barry’s lab. We are so sorry to hear this sad news about your son :(. Thank you for sharing this with us. This is mean that you are very strong and brave. For sure, we will pray for your son. Do not worry because God always take care of children. I believe that the child is an angle for God. I hope my words make you feel good and peace.

    My love to your family


  6. Michelle says:

    I just came across your blog on a link on Twitter. I lost my 4 year old daughter to this same tumour. It will be 2 years in January . It is the most heartbreaking thing to see. I am so sorry your boy is going through this too. From my experience I think not getting any treatment and enjoying the rest of your time with him is the best decision you could have made. We did go through radiotherapy and chemo trial but looking back I wish I hadn’t put Evie through it. Enjoy every second of your beautiful boy .
    Lots of love. Michelle xxx


  7. Maire O'Brien says:

    I pray that God continues to give you all the strength and courage to travel this very difficult journey together. God bless you all. I will pray for peace of mind and body for your family especially Oisin. Love and prayers, Maire


  8. Grandad Wilton says:

    On Sunday our beautiful Grandson stopped being a little boy and became an Angel.
    For a while the world is going to be a little off balance because it has lost a little member that helped hold it together.
    At the moment the quite, the peace; the loss is almost unbearable, but the sunshine will eventually warm our hearts again.
    Sheila and Barry we love you so much.
    Grandad Wilton


  9. Aileen says:

    You are in our thoughts and prayers


  10. Louise Kilbane says:

    Barry and Sheila
    I’m an old neighbour from Bishopland, you are all in my families thoughts and prayers, we are thinking of you all.
    With love
    Louise Kilbane and Family x


  11. Joy Burniston says:

    Just listened to your beautiful and somehow tranquil interview on the John Murray show. Found your calmness and strength, at this early stage of your adjustment to life without the physical presence of Oisin, inspiring. Blessings to ye all. X


  12. Himanshu says:

    Its hard to understand kids and within next minute, we realize they need love and affection, nothing else. I truly understand the situation you had gone through and pray for the family.


  13. So sorry to hear this – and thank you so much for sharing. I just got off the phone with a friend/client who’s in crisis and reminded her of one of my favorite quotes by the poet/mystic Hafiz:

    ‘This place where you find yourself, God circled on a map for you.’

    To see that you not only know this but have embraced it is extraordinary. Our children are our teachers – when we let them. This is every parent’s worst nightmare, and I pray that you get all the support and love and care that you need. You can contact me via my website (http://caitlinmiller.com) if I can be of service. I am currently based in London but travel to Ireland frequently and am available 24/7 by phone/skype. xo


  14. Jaile Jones says:

    may god bless you


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