Welcome to My Diary

Hello Everyone. As you know Connah & Debbie travelled down to London a few weeks ago to have a complete range of scans done at UCLH. We have been getting concerned lately that Connah's disease was on the increase as he has been complaining of headaches, eye strain and various aches and pain's,  all of which increased our stress level's to right off the richter scale. We decided that we would have a short break away so Debbie and Connah flew out to Dubai to meet me on my way home from work and use up my air miles. She brought with her a suitcase full of all of Connah's suppliments and organic food so he didn't miss out.  Needles to say last night after a quick meal and a clean up we were back doing Connah's treatment.  Any way we had a smashing time even though the weather was not up to much with lots of grey sky's. We got back last night and this morning Debbie phoned Dr. Gaze who had very kindly offered to do the scans for us. The news is that, there is no new disease what so ever. The primary tumour is of a smaller size than when Dr. Gaze scanned it almost 3 years ago. There is still a small amount of activity in the primary tumour and we should keep doing what we are doing. Dr. Gaze said that he had to do a double take as Connah's muscle and bone growth is great and that he should get out playing more football and bike riding and that when he is complaining of ache's he is having us on. This is great news and has taken a huge weight off us, so thank you very much Dr. Gaze. We will be having a celebration drink tonight of course after treatment! Thank you all for keeping up your support and your positive thoughts for Connah, we know it is working. Love to you all Debbie, Jim & Connah

Hello everyone. No news yet from London, but we are hoping to hear something shortly. Since coming back from London Connah has been back in school. Learnt a new dance at dance class. Got a very red face infront of his school mates when India (from school & dance class) gave him a Big Hug for getting her a Birthday present. Has been in trouble for not remembering to sing "Happy Birthday" to Nana on Thursday morning until prompted by Grandad's phone call. Got tripped up in the school play ground and has ripped open an old gash on his elbow and cut both knee's and was very upset when he told me about it on the phone last night (there was lots of blood). However he told Nana that "he might be okay for football on Saturday" if he doesn't have to move his arm! A Very Big Thank You to Kerry & Christian Darlington. Kerry sold one of her paintings on E-Bay for 500 pounds and gave the cheque to Debbie for Connah's Appeal. Thank you both very much. Good News from Lucas in Australia who is also using PDT Treatment his latest scans showed increased calcification compared to earlier scans, well done Lucas. Thats it for now, Love to You All. Debbie, Jim & Connah

Hello everyone. Debbie and Connah travelled down to London on Sunday laden down with a suitcase full of suppliments and organic food that even Hercules would have trouble lifting to University Colleage Hospital for 4 different scans, which will start today (Tue 16th). We usually have to travel abroad for Connah's scans but when we attended the Neuroblastoma Families Meeting last November at New Scotland Yard we met one of the Doctors who had scanned Connah almost 3 years ago and he talked with our Oncologist Dr Brennan and he called us back to say that Connah could have the scans done in London. We know from our meetings with Connah's Oncologist that she doesn't feel it necessary to scan until Connah shows returning symptoms. However Connah has never been completely clear of disease so our arguement is that it can spread again at anytime and recently he has been saying that he has had some twinge's and a couple of headache's plus occaisionally blurred vision (which is why Deb's and I look 105 instead of 50 something, through the constant strain). So Connah had the dreaded needle (canula) in yesterday and although he did try his best to be brave he moved at the last minute so they then had to take it out and stick it in his other hand. However a few minutes later clasping a new "Bakugan" toy he was fine. So fingers crossed for the scans ahead and we shall let you all know how they went as soon as we can. Please keep up the positive thoughts, we know they matter. Love to you All. Debbie, Jim & Connah.

Hello everyone. The last two weeks has been another whirlwind with racing Connah round to different venue's to do all of his clubs and we have now added football training on Monday nights to the list. Connah had to go to the dentist and have a filling last week. Well if I had taken the video camera I would be £250.00 better off as I could have sent it in to "You've been framed". The dentist wanted to drill a small hole in one of Connah's back teeth so he started with a quick probe about to shouts from Connah of "Hey, Stop, don't do that" Then the Dentist put two big wads of cotton wool in his mouth to keep it open (never usually a problem for Connah) and then began to drill. So Connah has the suction hose, the 2 wads of cotton wool, the drill and the Dentists finger in his mouth and still he continuously talked throughout the whole operation. The Dentist was laughing. Any way nothing got drilled that didn't need to be which I think was a surprise to us all. A couple of days later Connah went for his "Swine Flu" jab. This didn't go as bad as it could have and the Doctor stuck the needle in the arm as soon as she fraction of a second when Connah wasn't moving to avoid her, so not too much blood was spilt.

At weekend we were back at Wrexham FC where Connah was once again the Team Mascot and this time he brought them some luck and they had a 1 - 0 victory, Uncle Clive came with us and we all had a terrific day out. Photo's will be on the web soon. Everyone is well although Connah has been in some small pain now and again. We are wondering if as he is growing (which he is doing rapidly) the tumour is being a bit stretched and that is causing the minor pain! On the whole everything is fine. Even the rain is easying off! Thats it for now. Love to You All. Debbie, Jim & Connah xxxxxxx PS Thanks to everyone who helped sell and supported us with the Raindeer food over the Christmas period you all did a great job.   

Hello Everyone. We heard today the very sad news that Hannah Edwards had passed away. Hannah had been fighting Neuroblastoma for a very long time since Aug 2003. During that time she had done a lot with her life including being awarded The Star of Merit. The Star of Merit is awarded for any member of Girlguiding UK who has displayed "great courage or fortitude" and she and her Family did in every way. Our Prayers are with her and her Family. Love Debbie, Jim & Connah

Hello everyone. Sorry it has been such a long time since we updated Connah’s Diary but with Christmas, New Year, bad weather and restarting school things have just been a blur. So let’s go back to Christmas and say that we all had a Wonderful time. Connah’s Auntie Sylvia and Uncle Nils came down on Christmas Eve, which is when I also got home. Connah was very excited and got up 3 times during the night to ask “Has he been yet”? To which the resounding answer was “No and if you get up again he won’t be coming at all!”. Connah finally managed to stay in bed to 06.15am, which gave Deb’s just enough time to wrap some last minute presents and then we were woken to  yells of “He’s Been, He’s Been, come and look”. So it was tea and coffee to bring us round and lots of bags to put all of the wrapping paper in and 2 hours later we had finally got everything unwrapped. Loads of smashing presents and one very happy little boy sat in the middle of them saying “Grandad can you set up my Wii and balance board now”?

We had a lovely Christmas Day with our friends Paulina, Clive and Lukasz joining us for Christmas Dinner and then we had an ongoing air hockey marathon in session for most of the afternoon with Lukasz helping Connah to make up some Lego and lots of food and drink. Boxing Day we went down the beach for a walk with Monty and Connah had some fun on the play area next to the Nova before we all returned home a little bit frozen and windswept.  

At weekend we drove over to Glossop and had lunch with Great Grandma Broom. There was lots of snow around and Connah’s Cousins Hattie and Tom came over and they had lots of fun and playing and then outside for a quick snowballing.   

Lewis, James & James all came round to visit and have some fun with Connah and there was lots of leaping about on the Wii and on the air hockey. Connah got lots of good books for Christmas, which we are busy reading when he is under the lights having his treatment.

New Year was a lot quieter and Connah was spending lots of time in front of the tv in his playroom waving about the Wii controls and balancing on the board doing all sorts of sports and games including “Just Dance” which Connah loves and Grandad made a complete fool of himself at and I’m just grateful that we didn’t open it on Christmas Day when everyone would have seen. I was much better at Kendo Stick fighting until Connah stepped in to close and took a whack to the shoulder!

Then it was back to school but not for too long as the bad weather came and we had to collect Connah from school early and next day we were blanketed in white so we got out and built a snowman in the garden, which doesn’t happen too often in Gronant. We made a bad decision to take Monty for a walk as the paths were so slippy we did not enjoy it at all and Connah managed to end up on his backside 4 times in a short space of time. When we got back home it was time for the snowball fight, which we all enjoyed even Monty. School was back open next day so it was back to the grind for Connah and a few hours respite for Nana and Grandad!

Now it’s back to the routine of school, dance class, football club, chess club, drama club, treatment and whatever else we can fit in. Connah is in good health, although has been complaining now and again about some pain in the area of his one remaining tumour as he is still growing, eating like a horse and has enough energy to power up a power station we are going to continue on with his treatment and wait to have a scan in Feb / March. We remain resolute that we are taking the right course of action and that the treatment is keeping Connah in good health as we have still not achieved a state of remission yet. Please keep Connah in your thoughts and say a Prayer for those children who are not well at this time, Hannah, Sam and Sophie, James & Ashley. We Love You All. Debbie, Jim & Connah xxxxx

PS Thanks to everyone who sold reindeer food bags. Once we have collected all of the money we will announce what was collected.

Happy New Year Everyone. Well thats 2009 over with and our thoughts are for a New Year and what it will bring. Our Wish for the Year is that Connah will be free of this horrible cancer and be able to have the normal life that all children deserve. To all of the Families out there who are also fighting, keep fighting, never give up and just have Faith. Remember even when "The Fat Lady has sung, taken off here make up, put here rollers in and is sat infront of the fire having here coco" its still not over! Love to you all and Good Luck for 2010. Debbie, Jim & Connahxxxx

Sorry for the delay in updating the diary but I’m away from home at the moment and a lot of stuff has been happening. Any way Connah is doing fine. Apart from the usual football practice / chess club / dance class / drama class and all the school stuff and machines he (and Debbie) have had a busy couple of weeks. First off we have had a group of students from Gloucester University making a documentary of “a day in the life of Connah” this has been going on for some weeks and has now come to an end (I think the guys got tired of getting beat at “air hockey” every time they came up), we look forward to seeing the end result in the New Year. During this time Connah was practicing his “High School Musical” dance routine for dancing at the Prestatyn Bernardo’s benefit which was organized by Rachel (Prestatyn Dance Studio’s) to raise funds for Bernardo’s and it all went off very well, so well done Rachel and everyone who helped. Shortly after that Debbie had a phone call from Radio City FM to say that Connah had been nominated for their “Local Hero’s Child of Courage Award” so that was very exciting and Debbie and Nicola got out their “posh frocks” and all three went over to Liverpool last Tuesday and rubbed shoulders with a few Celebrity’s. Connah was picked to receive the Award and when he went on stage Debbie said that it was the first time he was lost for words and all he could think of to say was “This is Brill”! They all had a smashing time, thank you Radio City FM. Next day Connah went into school and was telling everyone about it and as they did not believe him he had to take his award and certificate in next day to show them (that was his story anyway).

Up in Scotland Auntie Sylvia and Uncle Nils have been busy chatting up the First Minister Alex Salmond who every year has an artist commission a painting which is used on the front cover of his Christmas Cards. These cards are sent all around the World and then after approximately 6 months the painting is auctioned off and the proceeds are split between the 4 Charities that the first Minister has picked to support for that year. One of the Charities picked is the J-A-C-Ks Research Fund which was started by the Parents of the late Jack Brown, Yvonne and Richard to research new ways to fight Neuroblastoma. If you would like to see the painting log onto: http://www.scotland.gov.uk/News/Releases/2009/12/07155037

When talking about the painting and the Charities the First Minister made reference to Connah and said that “the reason he had become familiar with the illness of Neuroblastoma was due to the stories he had heard (Auntie Sylvia) on Connah Broom and his daily activities and treatment and that he is a very brave little boy”! Well what can you say after that, Local Hero Award, First Minister of Scotland talking about him, Documentary made on his daily life! Next stop front cover of “Time Magazine”!

The week has also had lots of other events with the School Carol Service the other night, Connah & Debbie writing out almost 100 Christmas cards for all of the children of “Year 3 Class of Bodnant Juniors”. Connah went for allergy tests due to a re-action he had a few weeks ago and we have found out that he is now allergic to (in descending order) Horses, Cats, Grass and bed dust! Connah’s very good friend Thomas tragically died last week and the funeral was held on Wednesday, it was very emotional for everyone who attended. The school have organized that there will be one hundred white balloons released all with messages tied to them from Thomas’s school friends, Connah asked me last night on the phone to “look up in the sky for them on there way to Heaven with all their messages for Thomas”. To finish I would just like to say that “behind the Fabulas little boy who does all these things is, one very resolute Nana whose sole priority is that he will survive this illness and have a normal fun filled life whilst doing it, Close Friends and Relations who give their time and support to help us achieve this goal, lots and lots of “well wishers” from all around the World and all of you who say a small prayer every night for Connah's continueing good health and God without whom miracles don’t happen! Oh and me, occasionally! Thank You each and everyone. Love Debbie, Jim & Connah.

Hello everyone. Last Sunday we had the very sad news that Thomas one of Connah's school friends had died suddenly. It was a huge shock to everyone especially to all of his friends at school. Thomas his Brother Dillon and Connah had all been on holiday together to Portmadoc earlier this year where they all had great fun. They were very good friends and looked after each other at school. Connah went for his very first "sleepover" at Thomas's home and didn't stop talking about it for a week. We will always remember Thomas. Please say a Prayer with us for Thomas and for his Family to get through this terrible time. Thank You. Debbie, Jim & Connah.

Hello everyone. I have been really busy this last week with lots to do at home and school and guess what I have been on camera again! Some men from the University contacted Grandad and asked if they could make a short documentary about me and my treatment. So they have been down and filmed me having all of my treatment and then they talked to Nana & Grandad and also our friend Dr. Jessup. Then on Saturday they came back and watched me at football training and Grandad say me score a goal for the first time. Also they are coming back on Thursday night to film me dancing in Prestatyn at a fund raiser for Bernardo’s Charity. When it is all done we hope to be able to put a link into the website so that everyone can see it. When they were not filming I had them playing air hockey and they even sat and watched Prince Caspian on tv with me. Thanks Paul and all of the guys.

Everything is a bit of a rush this week as Grandad has gone back to work and Nana is having to chase me round on her own, but Auntie Maureen is coming to help her for my treatment at nights. But I am trying my best to be good! Auntie Sylvia, Uncle Nils and Jan were busy at weekend. They went to Aberdeen for the reindeer coming and the turning on of the Christmas lights and they sold all of the reindeer food that they had made and some pencils that Nana had made. So well done for braving that cold weather. Nana has been very busy too making reindeer food at night and Monty snuggles into his blanket next to her on the settee and goes to sleep whilst she is doing it (sometimes they both fall asleep, Grandad says shssssss). That’s it for now. Have a good weekend tomorrow. Love You All. Connah xxxx

PS Please visit www.teamsam.com and leave a message for him as he needs some positive thoughts at the moment as he having a tough time. Remember to tell him you are a friend of Connah’s.