Big DayPosted on: 02/09/2010
Hello everyone. Today is another Big Day for us, Connah starts back in Year 4 at school. He has been really good at getting up around 7am all through the school holidays so lets see if this continues now that school starts. He is really looking forward to seeing all his class mates again and swapping stories from the holidays and a bit apprehensive about meeting his new teacher! We went away in the camper for a couple of days to
Connah is practicing very hard at the moment with Tara his instructor on his dance routines, which he will be performing infront of the “First Minster of Scotland” at the J-A-C-K’s Fund Summer Ball in Aberdeenshire in September. These last few days of holiday he has been helping (off and on) Deb’s in the garden with his friend Daniel. Monty has been chasing round protecting the garden from low flying birds, which he has taken a dislike to for some reason! All in all, apart from the weather a good summer break. Love to you all. Debbie, Jim & Connah xxx
PS Adam Bird www.adamsappeal.org has just undergone surgery to remove his primary tumour so please say a prayer for his speedy recovery.
Alfi GoughPosted on: 06/08/2010
Last night we had some very sad news from Alfie Gough's Mum Sarah. Little Alfie past away last Thursday morning. No one could have fought harder than Alfie and his Family who have done everything that they possibly could to beat this disease. Through everything that he endured he continued to smile and laugh. Please all say a Prayer next Tuesday for Alfie. God Bless Alfie.
Four Years ago TodayPosted on: 03/08/2010
Hello Everyone. It seems an age or possibly just the the blink of an eye since we were sat writting "3 long years ago today". Another year on and Connah has achieved so much: One full year in school with 97.4% attendance, excellent even for a child in perfect health. One more year at Gail's Prestatyn Dance Studio and being part of a trophy winning dance group "Electric Blue". One year of receiveing the "Radio City Child of Courage Award. One more year of fighting with Doctors to get the treatment recognised. One more year of football coaching in all weathers at Prestatyn Football Club with Coach Trev and his team . One more year of loosing and gaining teeth. One more year of growing taller (almost as big as his Nana). One more year of cuts, scrapes, bruises, oh and a "verrucca". One more year of home treatment 5 nights a week almost every week of the year. One more year of making us laugh, cry, shout, cheer, clap, scream and pray. One More Year of Life! Thank You God for Connah.
Please say a Pray for all those children who didn't see one more year because of this awful disease.
A new Dance TrophyPosted on: 12/07/2010
Hello Everyone. Connah has been working really hard at school and at his dance routines. On Friday we had his Year 3 School Report. 97.4% attendance, with no pre-warned time off (hospital appointmnets only). This was a really great achievement in its self. His Teacher says that he is trying really hard and is a pleaseure to teach. Well Done Connah. On the dance side he has been hard at it practicing routines with his 3 friends and on Saturday night in Rhyl he was on stage with his drama group and they did a routine from "Mama Mia" and Connah had to sing solo for the first time (braver man than me!). At the end of the show awards were given out by the Head of the Prestatyn Dance Studio's, Gail Astley and Connah's friend India got the Top Award and Connah received a trophy for his dedication and improvement in dance over the last year. Photo's will follow when I get home next week. Other than that school is over in another week and Connah is looking forward to going on a few days hoiday with his friend James.
Auntie Sylvia and Uncle Nils are still working very hard up in Aberdeenshire on putting together the Summer Ball to raise funds for J-A-C-Ks (Joining Against Cancer in Kids) there is a poster on the website and we are taking a coach party up from N. Wales so if anyone would like to join us please contact us or Sylvia via the number on the Summer Ball Poster. If you are up in Aberdeen on the 10th Sept please get your name down as its for a very worthy cause and there are still some seats left.
Please spare a few moments to send some positive thoughts to a little boy called Alfie Gough (www.appeal4alfie.com) as he and his Parents are in need of as much support as we can all give them at this time. Thank you. Love to you All. Debbie, Jim & Connah
Race for Life & 3cm'sPosted on: 07/06/2010
Hello everyone. We had a smashing time away in the camper van during the first part of the school holidays. We went down the Welsh Coast and had some good but breezie days on the beach. Connah is fine and has had his friends Ethan and James round to play. He has been complaining about his shoes rubbing him so we took him to be measured as he had new shoes 8 weeks ago, unbelieveable he is almost in a size 4. I am thinking of strapping planks of wood to his feet so that we can keep up! Also we measured his hieght yesterday and he has grown 3cm's since he was checked in May. This is all good news really as growth means no NB activity!!!!!
Debbie has been training hard for the "Race for Life" with our nieghbour Muareen. The training paid off yesterday as Debbie and Connah along with Kirsty, James & Jake and preceded by Nicola & Nina finished the 5km's in under an hour. We think that Connah could have run almost all of the 5km's but were worried about him getting lost in amongst the hundreds of other runner / walkers. So a good time was had by all walking along the coastline at Rhyl.
However Connah is in bad books at the moment. He was riding his bike with his friends and was told not t go away from the bottom of the driveway. Sometime later he came limping up the drive as he had fell off his bike and grazed his knee's. When asked where his bike was we were told that it was left at the park! So after being cleaned and plastered up he was sent to get the bike and come straight home and when he got back his ears were burning as much as his skinned knee's! Thats all for now. Hope that you all had a good break too. Love to you All. Debbie, Jim & Connahxxxx
Summer Ball InformationPosted on: 28/05/2010
J-A-C-K Foundation Summer Ball
At
Thainstone House Hotel
Inverurie, Aberdeenshire
10th September 2010 at 7pm
Music by “Tutti Fruiti”
Casino with James Bond theme, by Elite Promotions
Raffle with good prizes
Auction
Tables of 10 available for £700
Single seats £70
If you need accommodation, we have negotiated a special price of £65 per room B&B
For more information, or to book your seat / table, please contact Sylvia Koren
Or by phone 01358 720550
Please help us raise money for research
Into Neuroblastoma Childrens Cancer
Connah's Scan UpdatePosted on: 20/05/2010
Hello everyone. Really sorry that there has not been an update for quite a while. However I had difficulty accessing Connah's admin site whilst I was away at work. During this time lots has happened. The most important being is that Connah is very well and enjoying all his normal activities. As you all know Deb's and Connah went down to London for scans in February (full report at the end), the report finally came through whilst I was away. Also Auntie Sylvia, Uncle Nils, Dario and Scott all did a very good job at the yearly Balmoral 5km walk. The weather started out miserable but improved as the day went on and apart from the usuall aches and pains had a really good time. Well done to Dario who ran the 1.5km's, hopefully next year Connah will be able to run it with you.
Dance class has been going really well and Connah has 4 compititions coming up over the next couple of months, which he and his group have been practicing hard for. The PDT Treatment is still ongoing 5 nights a week, however we do plan to have a few days off during te school break and again in August. In June Debbie and Connah will be doing the 5km walk for "Race for Life" along Rhyl sea front and after that there will be a quick dash in the car over to Wrexham where Connah and I will be doing the 5km walk/run for the "Nicola Fund" so fingers crossed for nice weather.
As I said earlier we had Connah's scan report through a few weeks ago. I have attached it below as we think that it has significant content to the way in which we have treated Connah's disease over the past two and half years, since he finished NHS treatment in March 2007. Recently Connah and Deb's and Auntie Heather went to see Connah's Oncology Consultant for his 6 monthly update and the scan report was discussed. However as Connah is not receiving treatment from the NHS the Consultant cannot discuss whether the PDT Treatment and the healthy diet is having a positive effect on Connah's health or not. Deb's did ask if we could be refered to the PDT Consultant down in London but she was told to "ask the Consultant who did the scans" to refer Connah! I did text a question to Deb's to be asked at the meeting, which was "If mIBG is the bench mark scan for the NHS is Connah now classed as being in remission"? What we were told was to read the report and interpret it as we think fit!
What we do know is that for years we have been saying that healthy organic eatting does affect the childrens condition and improves the immune system and we were being told that was "rubbish" and a complete waste of money! If you read certain other childrens website's they are now being "advised" by thier Oncologists to eat healthy organic food, take suppliments and have exercise, wonder where they got that idea from!!! Please read Connah's report and draw your own conclusion as to the state of his health, which is what Deb's was told to do.
Connah’s Scan Report (extracts).
123 – iodine MIBG scan 16. 02. 10: The calcified adrenal mass and the abdominal lymph nodes do not show MIBG avidity. There is low grade (less than liver) MIBG avidity in the left supraclavicular and pre-tracheal lymph nodes. Conclusion: The Neuroblastoma lesions do not show MIBG avidity.
This contrasts with the previous MIBG scan of June 2007 (last NHS Scan). On that occasion increased uptake was seen in the left supraclavicular region, anterior mediastinum and below the diaphragm the primary site was noted in the right adrenal region and there was evidence of par aortic MIBG avid disease. There was also activity seen in the bone marrow of both clavicles and the distal end of the femur. The intensity of uptake in the soft tissue lesions was high.
FDG PET/CT scan 18. 02. 10: The supraclavicular and paratracheal lymphadenopathy does not show FDG avidity. There is focal FDG activity in the anterior mediastinum corresponding to normal thymus. There is physiological neck supraclavicular axillary and para-spinal brown fat activity. The adrenal mass shows low grade (SUVmax 2.8) FDG avidity. Most of the retroperitoneal lymphadenopathy is not FDG avid; there is only low grade (SUVmax 3.0) activity in the aorto-caval lymph nodes. There is no FDG avid skeletal lesion.
This contrasts with the appearances of the FDG PET/CT scan performed at UCLH in June 2007. This showed increased but patchy FDG activity in the right adrenal bed which crossed the midline and followed the left par aortic region down to the left iliac chain with patchy bone marrow activity.
68-Gallium Octreotate PET/CT scan 17. 02. 10: There is dotatate uptake in the left supraclavicular and right paratracheal lymphadenopathy. The lungs are clear. There is dotatate uptake in the right calcified adrenal mass and in the bilateral retroperitoneal lymphadenopathy. No focal bone uptake.
I have taken the opportunity to look at the images and discuss them with another consultant. It is quite clear that taken as a whole, the imaging shows that the masses of disease which Connah had in 2007 are significantly smaller now. The biological activity of the residual masses seems to be much less.
It is difficult to interpret the changes in Connah’s disease. It is clear that it has regressed appreciably over the last two and a half years. It has probably undergone a differentiation to a less aggressive type. It is really not possible to say whether this improvement is due to the spontaneous natural history of the disease, or to the effect of the complementary treatments he has received over this time. I know that you have been managing his diet very carefully to ensure that he only receives organic foods, free from artificial preservatives, colourings and other additives. I know also that you have been treating him with Photodynamic Therapy. This is not a generally recognised treatment for Neuroblastoma, but may be it has had a beneficial effect.
In conclusion it is safe to say that Connah’s disease activity is much less than it was previously even though he has not had any conventional anti-cancer treatment recently. Unfortunately it is not possible to predict with certainty what will happen in the future. It is possible that his disease will reactivate in time. However I very much hope that he will be one of the small number of patients with stage 4 Neuroblastoma who become long term survivors. It maybe that he will never be completely disease free, but if he can live a normal life with a small volumes of residual imageable abnormality that will be a perfectly satisfactory outcome.
PS Please watch the site for news on the forthcoming Summer Ball in Aberdeen, which is being put together by Sylvia & Nils to raise funds for J. A. C. K (Joining Against Cancer in Kids). Love to you All. Debbie, Jim & Connahxxxxx
Winning Raffle NumbersPosted on: 01/04/2010
Hello everyone. Thanks to everyone who supported the raffle to raise funds for J-A-C-Ks (Joining Against Cancer in Kids). The winning tickets were as follows: 1st Prize Mrs Hughs (white 601 - 605). Runner up prize winners: Lesley (Ellon pink 491 - 495), Stan (N. Wales yellow 181 - 185), Paul Lonsdale (green 261 - 265), Mrs. C Bullock (blue 46 - 50), Clare Owen-Jones (grey 56 - 60), Ceris Roberts (grey 206 - 210), Courtney (N. Wales green 171 - 175), Chantelle (N. Wales white 416 - 420), Gavin (N. Wales grey 371 -375). Thanks to everyone who helped to sell tickets and to everyone who supported and bought tickets to this very worthy cause. A total of £577 was raised. Love to you All. Debbie, Jim & Connah
Scan UpdatePosted on: 26/03/2010
Hello everyone. We received this e-mail today from Dr. Gaze at UCH where Connah went for scans in February.
Dear Jim & Debbie,
This is just to document the telephone discussion we had a week or two ago in relation to Connah's scans done at UCH last month.
The mIBG SCAN now shows no uptake of mIBG in the residual abnormal areas. The FDG(glucose) PET scan showed no uptake in most of the abnormal areas and only the faintest uptake in one lymph node group..
The Gallium Octreotate PET scan showed uptake in all the abnormal areas that is to say the primary tumour region and the lymph nodes.
The CT component of the imaging showed that the masses are significantly smaller than in the June 2007 imaging.
The interpretation of this is that Connah's disease has regressed appreciably over the last two and a half years. It has probably undergone differentiation to a less aggressive type. It is not possible to say whether this improvement is due to the natural history of the disease or to an effect of the complementary treatments he has received over this time.
Best Wishes to you and Connah
Dr. Mark Gaze
Thanks to everyones support and positive thoughts. Love and hugs, Debbie, Jim & Connah
Scan NewsPosted on: 09/03/2010
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
