Thursday, August 16, 2007

A special packge arrived today

We recieved very special package yesterday! It arrived from the US and contained Kates Cure Bracelets! This pic is of Kate - isnt she gorgeous! She has the most amazing Mom, Karen who has produced these bracelets in order to raise funds and awareness for Neuroblastoma - she is also arranging a gargage sale next weekend in the US to raise even more funds for research ! I salute you Karen and Kate - you are an inspiration and you have inspired me to do whatever i can to help and raise awareness ! Thank you so much for taking the time and effort to send the bracelets to us - we wear them with pride and for Kate! We are proud to be part of THE CREW! For those of you who havent already gone to visit, please take the time to visit Kates Cure Crew Website I look so forward to Deqlan and Kate meeting one day!
We also recieved Neuroblastoma bracelets from the Childrens Neuroblastoma Cancer Foundation , also based in the US and I wanted to list some facts from the brochure we recieved
Neuroblastoma is a solid tumor cancer that originates in the nerve tissue of the neck, chest, abdomen or pelvis, but most commonly in the adrenal gland. The term neuro means 'nerves' and 'blastoma' refers to a cancer that affects immature or developing cells.
It is the third most common cancer in children. It accounts for about 8% of all childhood cancer but 15% of the childhood cancer deaths.
Neuroblastoma is the most common cancer of infancy with an incidence rate almost double that of leukemia.
The average age at diagnosis is 2 years old. Approximately 70% of all children with neuroblastoma have metastatic ( spread to other parts of the body) disease at time of diagnosis.
It has one of the lowest survival rates of all paediatric cancers. Children with high risk disease have a survival rate of less then 30%.
There is no known cause or cure.
Shocking figures - we have to do something about this and cause more awareness and research to take place - there is unfortunately no research planned or happening in South Africa for Neuroblastoma but I would like to see what we can do to contribute towards research in the US and would love to plan some fundraising projects and ideas to see if we can help - I shall forward details after we have had a chance to put our thinking caps on! We have to fight for these children, we have to make a difference.
We are assisting CHOC ( Chilhood Cancer Foundation South Africa) with a Birthday party they are hosting for children at Kalefong Hospital - they host a party twice a year for these children with cancer that have Birthdays and are not fortunate enough to celebrate or recieve gifts . We have decided to start a programme called DEQLANS BUBBLES OF HOPE AND BALLOONS OF BRAVERY which we are going to give to these children and others that are stuck in hospital rooms for often lond periods of time - just small things to take their minds off their illness for a while and to bring a smile to their faces would be a great gift for us to witness - if any of you have any ideas or would like to contribute in any way let us know !
We have many other plans to assist CHOC with and our Christmas project this year will be to help them in anyway we can - we plan to assist in putting food parcels together - but we will keep you up to date and call on you to help us if you would like, closer towards the time
Deqlan has been well otherwise - he has eaten really well yesterday and today which i am very very happy about ! Got to get some nutritious food into our tough soldier! He loves his biscuits and he tries to get a sip from Nanna's diet coke glass whenever he can - we think he loves the bubbles in the cooldrink!
His eye is looking great to - it still waters a lot but we think its because of all the movement and moulding of the bones and Dr De Jager did say it could take a few months to get back to 100% - we are patient - I see the miracle happening before our eyes !
He is a little more pale then normal but seems to have more colour in his cheeks today
He is talking a lot - wish I could understand what he is saying ! We love listening to him and the new words coming out of his mouth , but the only word we can definitely make out is Mama!
You all know how he loves the washing machine - he sat on the kitchen floor last night watching it go round and round speaking to the machine at the top of his voice - mark and i laughed so hard and I was fortunate enough to get some of it on tape - a priceless moment!
He also take great delight in chasing the dogs around the house - during the day Deqlan and Otto have a ball spuring each other on, Deqlan laughs from the bottom of his belly at this game ! At home its Shelby and Stuffys turn and he is besotted by his Doggies and wants to jump out of my arms the minute we get home! He loves listening to them bark and laughs and chuckles with absolute delight! A new development is chasing our cat - they where never really interested in each other before , but they had a good time together last night - its quite difficult though to explain ' softly' to my gorgeous boy but we know in time he will learn and they will continue to be best friends! We have to wash hands and limit contact with the doggies hair as this could also compromise Deqlans immune system so we keep a careful eye on them - Deqlan is just like Logan - Logan LOVED our Dogs and Blue from the start and here favourite game was playing with the dog food - picking it up out the bowl and feeding to the dogs - Deqlan definitely going to take after her this way!
We are going to see Logan this weekend - Hooray - well at least Mark is going to fetch her and she is going to spend the night with Meggy and Conrad - where she will be spoilt rotten as always, we will battle to get her home again ha ha ha ! I am also hoping to pop in to see her to at least give her the hug i have been so wanting to give her and to see how she has grown - will show her pics of Deqlan and will take pics of her to show Deqlan
Another favourite at the moment are his tv shows in the morning - Big Cook Little Cook and Telly Tubbies ! Big Cook Little Cook reminds me so much of Mark and Deqlan - Mark loves holding Deqlan in the kitchen showing him what to cook and how to cook ' now we put some salt in this and then we mix it all together ' I LOVE IT !
Please continue to pray for our soldier that his blood is great for us to go ahead with our planned 6th round 20 - 22 August.Please pray that the main tumor continues to die and shrink and pull away from the blood vessels. Please continue to pray that his immune system stays as strong as possible and that he stays healthy and well. Please pray for all our friends that are battling neuroblastoma as well as other childhood cancers.
Thank you my dear friends and family - I cant not wait for you all to meet our Deqlan - I continue to tell him about you all every day - he knows how very special you all are and how Blessed we are to have you as part of our army
All our Love and God richest Blessings
Mark, Samm & Deqlan


Charli Ann said...

thank you for posting more facts and information about NB for others to read...I feel that if we let people "in" our lives and really know the facts something will change. Without the honesty of the good, the bad, and the ugly - things will never change.

WAY TO GO!!!!!!!!!

Anonymous said...

Dear Bev Sam Mark and Deglan contimue to pray for you all I feel this scripture is for you guys"For I know the plans I have for you"declares the Lord plans to prosper you and not to harm you plans to give you a hope and a future. Jeremiah 29;11
Contining to pray for you all lots of love Ruthxxx

Anonymous said...

Hi Mark, Samm and beautiful Deqlan.

Have just got back from a week in London and am catching up on Deqlan's news. You guys are the most amazing family. Your stories of Deqlan at home in his normal routine really make me smile. I can just picture Mark teaching Deqlan how to cook! How sweet!!!! I would give anything to see you all now and give you a massive hug!!!!! We will be thinking of you on the 20th when the next round of chemo starts, and of course, will be in touch for your anniversary!
Love you guys loads and loads
Sam xxxx