Jacks DIPG battle

A little background about our son, Jack Craven, who is an identical twin brother to Billy and big brother to Oliver, 6. Jack is currently  8years of age. Jack and Billy were born with Twin to Twin transfusion syndrome and at many points through the pregnancy we were told to be prepared for the worst. Due to Twin to Twin Billy has just recovered at the age of 6 from his medical treatments. Regardless they are an absolute miracle. All three boys are football mad and love play continuously throughout the day. This can start as early as 6am if we don’t catch them sneaking outside to play in the garden together. Jack has also become an incredible artist and prior to his diagnosis would spend hours drawing beautiful art for his family.

Over summer 2023 we started to notice Jack lose his confidence. He was holding back at football and he would just say things like “I don’t have any friends at school” or “nobody likes me”. This was unlike Jack as he has always been so confident and loves his friends which he is lucky enough to have plenty of friends from school and sports clubs. He started to appear a bit clumsy, falling over his own feet or spilling drinks. One afternoon, in preparation for school, we practiced handwriting. Jack’s usual neat, perfectly formed handwriting looked different and unreadable. The final straw was a Tuesday morning when we went to take Jack on a bike ride. Jack just couldn’t work out how to peddle his bike that he was amazing on a couple of weeks prior.

Due to this we took him straight to the doctors which fortunately we were seen the same day. We were referred to a paediatrician. Two days later we received a call from York hospital who asked us to make our way down the hospital as a matter of urgency. It was at this point we knew something was not going right.

We rushed to the hospital and when we arrived the doctors were very quick to do Jack’s neurological checks. As he was going through these checks our heart was just sinking. We knew inside that this could be something serious! The consultant asked us “what do you think is wrong with Jack?” Which we responded with “a problem in his brain “. The consultant agreed and plans were made for Jack to be admitted. The next few days were extremely busy with blood tests, MRI scans, X-rays and meeting plenty of specialists. As Jack has never been in hospital or even been Ill this was an extremely frightening experience for him.

After 4 days of being at York hospital we were informed that a bed at Leeds General Infirmary (LGI) has been made for Jack. We were unable to come home and required to go straight there asap!

we were handed a letter to give to the staff at LGI, like any parent we decided to read the letter. It was all a lot of long medical terms so we didn’t fully understand, but at the bottom of the letter were words: Diagnoses: Diffuse Intrinsic Pontine Glioma (DIPG). The one we didn’t want, the one we haven’t allowed ourselves to read about because there is 0% survival rate. The time at LGI was very difficult as there was a lot of waiting, confusion and fear. One minute Jack was being prepped for a brain biopsy, the next we were told a biopsy wasn’t required for the radiotherapy as this would be given asap.

some doctors spoke to us as if there was hope which was even more confusing and led to us questioning whether the diagnosis was actually confirmed.

it wasn’t until Jack’s first appointment at St James that we were told the horrific reality. Jack would be offered a palliative course if radiotherapy. This would hopefully give us time, maybe a few months where Jack got some relief from his symptoms, a time we could use to make memories as a family. We were told that some families choose not to treat at all but the idea of losing Jack so soon was unbearable. We have to try and fight this our precious boy still has so much to experience in his life.

Jack is currently mid-way through his radiotherapy. He can barely walk, talk and struggles to swallow, resulting in choking and aspiration. However he still smiles, hugs and loves a good joke, even though he has lost so much. (His honesty is more brutal now so be-warned if you are easily offended!)

as parents we cannot accept that there are no options for our beautiful, kind little man. With so many promising drugs and trials out there that might give Jack a better quality of life but possibly the gift of more time. We are desperately seeking out a trial for Jack. Unfortunately, due to the lack of biopsy we have been ruled out of so many. However, there are drugs available to purchase that might give our boy more time and a better quality of life. The next fortnight will be spent securing a treatment route for Jack. Although there is a trial in the Uk, the most promising ones available to Jack are all overseas. At the moment we have found trials in America, France and the Netherlands. Unfortunately there is no promise that jack will be accessed on any however we will never give up without a fight.

There has been good news for a treatment for adults with DIPG very recently so we are hoping and praying to prolong life until a child’s one is available. All the funds raised is to take Jack wherever is required as soon as we can possibly go. Any funds raise will also help us to pay for treatments.

A massive thank you to anyone who has and is supporting us through this. Although jack can’t say much right now I’m confident he feels the love around him. We hope and pray that, as well as giving our boy a fighting chance, that we and all those around us can help to raise awareness of this terrible disease that strips a healthy child of everything and gives them no hope.

Thank you for caring, and for taking the time to read this about our beautiful boy.

Thank you everyone who has donated for jack, we are overwhelmed with the support which has gone above and beyond our hopes. 

Today we met with the radiographer consultant who has given us more to think about. We have unfortunately received the bad news that it is unlikely Jack will be able to fly which has added further complications in terms of securing treatment. However this is just another obstacle we need to overcome so we are not losing hope. 

We still have the whole of Europe to consider as well as other transport means to other countries.

We have increased the fundraising target in response to information we are receiving about the costs of overseas travel, accommodation and treatment. We are also considering, alongside everything, if buying a cheap little motor home, would be the most comfortable way for Jack to travel to his treatment, ensuring we can stop regularly. Again this is just an idea and as soon as we have more details about actual treatment costs we will update everyone who wants to know. 

Again, thank each and every one of you that’s read jacks story, shared far and wide and of course donated to help with his treatment. We are starting to see small but encouraging progress in his symptoms. This boy is amazingly strong