Thursday, January 29, 2009

Ruan Van Tubbergh


Dear Friends,

I am hearbroken to tell you that our little friend Ruan, has gone home to be with His Heavenly Father

I want to thank you all so much for praying so hard for him all these months, and i ask you to please pray extra hard for his mommy Yolandie and his grandparents – who have been the most devoted courageous family to this amazing soldier of God. Yolandie and Ruan have been in and out of hospitals since April 2007, he was diagnosed round 9 months of age, and his recent stay was over 6 months , with half the time being in ICU. Ruan seemed to have beat the leukaemia, but suffered terrible side effects after having two stem cell transplants last year, especially relating to his precious lungs. He would’ve turned 3 on 17 July.

We met Ruan in July 2007, when Deqlan was having treatment at little Company of Mary – Ruan and Yolandie immediately crept into our hearts and we became great friends. Deqlan and Ruan used to visit each other in their rooms, even if it was just a quick hello through the glass door. Yolandie is a single mom , who had to stop working in order to look after Ruan, and her parents, who live in Vereeniging, looked after her and Ruan -driving through nearly every day to be with them. They are the most devoted, loving , positive family we have had the pleasure of meeting on this journey . Yolandie and I pick each other up on the days we need it the most. Yolandie, you are the most amazing woman i have ever met. Your positivity, your faith and trust in Our Lord, your courage, the heartache you must have endured for so many months – you are a true women of God and He is going to carry you in the moments and days and years to come.

I will never forget walking past Ruans room, and blowing a kiss to him, and getting one back from him. I will never forget the roar like a lion, he made when he read The Lion King. His greatest love was for balls and bubbles and Barney – whenever we saw Ruan in the waiting room and he was in need of some cheering up, Nanna would bring out her bottle of bubbles and she would get shrieks of delight and smiles of joy from Ruan as he tried to catch and point to the bubbles. Nanna even became known as Ouma Bubbles to Ruan. We were delighted to attend Ruans golf day in July last year – held to raise the money to find a donor for the stem cell transplant. Ruan was in great spirits, running around hitting his golf ball and stealing everyones hearts. We were heartbroken to see Ruan at the CHOC Christmas party, so frail , not able to even eat or drink, and in lots of pain. Barney was hands down Ruans favourite guy! He had every Barney dvd you could think of and every book to. I actually wrote into Highvelds Christmas wishlist to get Barney to go and visit Ruan. When that didn’t turn out I was delighted to visit Ruan on the 23rd of December to deliver him a Barney nearly as big as him, he loved him. I was devastated though to see the immense amount of pain Ruan was in. But still kept the Faith and trust in Our Lord that Ruan would be healed. Our Lord has now revealed to us, that Ruans healing is not of this world, but with Him in heaven.

Ruan, we love you , we will miss you more then you can imagine. You fought such a brave fight, you are our hero. I promise you I will continue to be there for your mommy and your ouma and oupa whenever they need me, and you will always always be a part of our prayers, our hearts and souls, we will never ever forget you. “ I love you, you love me , we’re best friends as we should be, with a great big hug and a kiss from me to you, wont you say you love me to?’

God bless, and thank you for your prayers, Love
Mark Samm Deqlan Logan
Ouma Bubbles and Uncle Derek
Meggie, Conrad and Keaton
Our Circle of Moms prayer group
Deqlans prayer army



SACRED HEART OF JESUS, WE PLACE OUR TRUST IN THEE , ALL FOR THEE OH LORD, OH MY JESUS ALL FOR THEE

Wednesday, January 28, 2009

FRIENDS OF WILL

FROM OUR BUDDY WILLS SITE - WE ARE HONORED TO KNOW YOU LACEY FAMILY ,AND WE TAKE OUR HATS OFF TO YOU FOR ALL YOU ARE DOING FOR OUR CHILDREN, YOU ARE INSPIRATIONS. WE ARE SO TOUCHED YOU INCLUDED DEQLANS STORY AND I WAS SO MOVED TO SEE EACH FACE, EACH STORY, A PART OF THESE AMAZING CHILDREN DISPLAYED FOR THE WORLD TO SEE AND LEARN FROM AND REALISE THE COURAGE , HEARTACHE, MIRACLES AND NEED FOR A CURE RIGHT IN FRONT OF OUR EYES.

Here is a slide show from Vicki from Saturday night that she posted on Friends of Will.Each of the tables in the hall honored a child still fighting NB, in NED status, or sadly who have lost their battle. Many of these children may be familiar to you as you may have visited links to their sites from Will's page in the past. There were balloons with a picture of each child on them, then their table had a few photos of that child, a few of their favorite items, and a brief synopsis of their history. It was very moving to me as I walked around the hall and would catch a glimpse of the smiling face of Lucas, or Max, or Katie as I was greeting friends and strangers alike all in united effort to help save kids lives.

http://friendsofwill.ning.com/photo/photo/slideshow?feed_url=http%3A%2F%2Ffriendsofwill.ning.com%2Fphoto%2Fphoto%2FslideshowFeedForContributor%3FscreenName%3D26hp6njsvv6b8&back_url=http%3A%2F%2Ffriendsofwill.ning.com%2Fprofiles%2Fprofile%2Fshow%3Fid%3DVicki%26



THE EVENT RAISE OVER 40 000 US DOLLARS TO GO TOWARDS FINDING THE CURE FOR NEUROBLASTOMA! PLEASE, PLEASE CONTINUE DOING EVERYTHING YOU CAN TO HELP US FIND THAT CURE - WRITE TO OPRAH, SUPPORT FUNDRAISERS, PRAY, SEND IDEAS, HELP US RAISE THE FUNDS SO THAT THESE AMAZING DOCTORS CAN BE LEAD TO THE CURE FOR OUR KIDS.

Monday, January 26, 2009

Mama Mia

Our 'red indian' warrior coating himself with sand!

Go all blacks! Deqlan in his all black jersey - Dada couldnt be prouder! Oupa Chris brought it back from his recent visit to Sandi and Mike in New Zealand

Logs and Joshua racing

Deqlan and Keaton in their Noddy pjs!

What a lovely tickle for T

One of the most stunning presies Keaton got - a portrait from one of his buddies Dewald - his mom did this herself!
Playing with Coreen and Loren
Knock knock whos there?


Happy as ever


i love Deqlan full of mud!

Nix and Darryl entertaining Deqlan - rather practising!



Logan in action, about to go into a double somersault with a side twist!

The best part of the jumping castle is when it deflates!

Nanna enjoying Keaton beaton

The girls catching up



Jeran playing with Keaton

beautiful Reece, look at those eyes!


Aunty Jen & Uncle Ken
Dee, me and Mom

everyone chilling
Nana and Deqlan playing fussbol
Yippeee!
The boys in jacuzzi
Hannah giving Nana a big hug
Deqlan and Ivan playing foosball
Wes still supporting baby Declan
Reece! Its your birthday next!
Nanna, Keaton and a very proud Meggie
How cute are Malakai and Caden?
Happy Birthday dear Keaton Happy Birthday to you!
After a much enjoyed dunk in the pool
Elriza and Mr Caden in the most cutest hat!
Noddy, sorry Logan!
Best buddies
The birthday boy swimming with Hannah

Hannah and Logs
Hello Mr Malakai!
The STUNNING kids table and Noddy treats, stunning!There were even noddy bells on the table cloth, Meggie even made Strawberries dipped in chocolate to look like Noddy hats, hats off to you Meggie and Conrad!
racing cars and noddy biscuits - to divine!
Keatons 1st Birthday table

Noddy and Big ears riding Keatons cake!

Keaton enjoying his balloons!
mark wishing keaton

Hi Everyone
Hope you had a great weekend!
Our week started off very early this morning as speech and occupational therapy resumed and it went very very well.


Martie, Deqlans speech therapist was very impressed to see Deqlan spending more time sitting on the chair doing an activity then just getting up within a few seconds. He also didn't try and pull me around our out of the room, so we are happy with that.
Then we went to see Anri whom we haven't seen since Oct i think last year , and she was very happy to see Deqlan. Deqlan LOVED the rice bucket and enjoyed letting the grains filter through his fingers and feel them in his toes. We are trying to teach Deqlan instead of throwing the sand or rice grains he loves so much , with no purpose, to try and show him to throw it into something, to give the action a purpose, so that the habit of throwing doesnt become an actual habit! We are very sad though to hear that Anri will be leaving the Baby Therapy Centre at the end of the month and will miss her terribly. So we will meet our new OT next week Wednesday,

We also start a play group next week Tuesday , which i am so excited about ! Its at baby therapy centre and there will be a group of max 6 kids - and for 45 minutes we will try and play together and share things and get Mr Deqlan used to being in a structured environment doing specific activities with other kids - cant wait!
We had a great weekend and continue to see huge improvements in Deqlan - firstly the transition from normal food to gluten free, casein free, sugar free, yeast free food is going much better then planned. Deqlan is already eating gluten free bread (that actually looks like bread , you wouldnt know or taste the difference), gluten free pasta & spaghetti, gluten free biscuits that look like oreos, gluten free crisp bread and this morning we even tried gluten free chelsea bun , which was amazing! He hasn't had his favorite cream soda drink in nearly 2 weeks, he hasn't had his beloved choc a break biscuits for nearly 1 week, so slowly but surely we are going to do this, i am so proud of Deqlan, he really is taking this well - i think the trick is to do it slowly , with Deqlan - some folks go coldturkey , but we would have huge issues with Deqlans milk, which he loves so much! One things for sure , he definitely loves italian food as much as his Mama does! We have also gotten Deqlan drinking plain water, yes plain water! And pear juice - the only fruit juice that doesnt cause havoc and feed the candida - so Deqlan has really made huge steps in the right direction! So proud of you my boy
Deqlan also has a rash on his back at the moment - it started in october last year with one dot, looking similar to excema , then the dermatologist said he had no explanation , put cortisone on, then it kept coming back, every time 2 or 3 dots more, this time, most of his top back is covered - and what do you think its from .....CANDIDA ! Dr L guesses is the cause, plus the reason for the delay in talking, the reason that Deqlan walks on his tippy toes and and and... so we are sending off a stool sample to a lab in cape town that will tell us if there is a candida problem , leaky gut issues etc.


Deqlan is making some new sounds! On the same Thomas dvd, in the same place, he started saying 'kuk' 'kuk' and we figured out this is his word for Ducks! Hooray - Mark and I were so very very happy , last night we heard him so Ka for cat! So we are thrilled !

Deqlans nappies are also a zillions times better - i think its got a lot to do with cutting out the gluten and sugar already and this just motivates us more !


I am reading a booked called A REAL BOY -and boy its it fantastic! Its about a boy in the UK who is so unbelievably similar to Deqlan - their loves and certain traits are almost identical - and the say no two kids on the spectrum are the same - but Deqlan and David do seem to have a lot in common! I have never ever laughed out loud when reading a book, but this book has me smiling and laughing and crying - i have ten pages to go and not wanting it to end. It just continues to give me so much hope that ALL THINGS ARE POSSIBLE TO THOSE WHO BELIEVE, THOSE WHO HAVE GOD AS THEIR GOD, THOSE WHO NEVER EVER GIVE UP HOPE AND THOSE WHO WILL NOT ACCEPT WHAT OTHER PEOPLE SAY.


Hope you enjoy the pics from Keatons birthday! Please continue the prayers for Deqlan and all our warrior friends and angels around the world

Have a great week, God Bless and lots of love
Mark Samm Deqlan Logan
SACRED HEART OF JESUS WE PLACE OUR TRUST IN THEE ALL FOR THEE OH LORD OH MY JESUS ALL FOR THEE

Saturday, January 24, 2009

Happy Birthday Aunty Shea

Dearest Aunty Shea
Wishing you the most wonderful Birthday for today and many many more!
Stay the amazing, giving, caring, thoughtful, loving lady you are!
Know that you are loved and appreciated and missed each day!
Hoping that you are relaxing today and that you are going to be spoilt rotten!
Thank you for all your love and care and support and prayers for Deqlan and our family, we are blessed to have you in Deqlans prayer army!
God Bless and lots of love
Mark Samm Deqlan Logan

Friday, January 23, 2009

Great news for Declan

FROM LAST WEEKS ENTRY AFTER SCAN RESULTS:

Hello my friends
Got the results today. 1) There is nothing in or growing on my brain (except brain cells of course) 2) The monster is my orbit (eye) is “just a sliver” my Doctor said 3) My lungs are clear 4) The monster is my neck has got much smaller 5) No-one knows what the heck those bumps were – the kitty cat scan couldn’t tell.
So the part we like most and are celebrating is the monster “sliver”. Before it would always grow back after chemo and it has been 2 months since surgery and nothing has grown back, so we think that is very exciting news. As for the bumps, the Doctor said if they go big again, we can do an FNA, where they stick a needle in and suck some of it out to run tests. But at this stage they have almost disappeared so we gonna leave it for now and if they come back, we will take steps. Even though the Doctors don’t know what my bumps are we are happy cos they said they don’t look like monsters – so that’s good news don’t you think.
I went and got some blood today. I just love it. For 5 hours Mommy is mine and mine alone. Nowhere to go and nothing to do except play with me. It doesn’t get better. Daddy started his exercise program this morning. Mommy hoofed him out of bed this morning when I woke up at 5.30 and sent him off on his way. Mommy doesn’t know, but Daddy told me that he went and parked his car outside Wimpy at Featherbrooke just up the road from us and waited for them to open at 7. Then he had a man size breakfast which made him work up a sweat which then satisfied Mommy that he had indeed done some form of sports. Daddy’s plan is to tell Mommy in a month’s time that exercise is bad for him cos since he started his sports program he gained 5kg. What a naughty Daddy!
Lots and lots and lots of love from a very happy Declan, who slept through again last night because he wasn’t an ice lolly.
P.S. My Christening video is on the Home Page and not the About Declan page – sorry – Mommy’s porridge brain at work again

WHAT DOES AUTISM LOOK LIKE

Wanted to share this little excerpt with you all from an email i recieved this morning from '5 minutes for special needs'

Posted: 22 Jan 2009 02:06 PM CST
The other day I was talking with a classmate—someone with whom I’ve recently become acquainted—and we got on the subject of autism. The conversation turned to my daughter, and I showed my friend a YouTube video of my daughter singing. The response I got was, “Wow, I would never guess she had autism.” I get that a lot; some folks go even further, telling me that my child looks so “normal.” What does normal look like, anyway? For that matter, what does autism look like?
Part of our family’s journey with autism has meant dealing with the public’s perceptions of what autism is and is not. When I was a teenager, “Rain Man” was in theaters, and Dustin Hoffman’s portrayal of an autistic man left an indelible impression on the minds of many people. From that time on, Hoffman’s Raymond was the persona that most people assumed personified the average autistic. For lots of autistic people and their families, educating the public about the autistic spectrum and the fact that no two auties are the same is important.
So what does autism look like? I don’t know that I can ever completely and succinctly answer that question. But I know this: I’d sooner be able to define autism than be able to define normal.
Spread the Word!

Thursday, January 22, 2009

Baby Daniel

Congratulations to Tracey and her Husband and Luke and the arrival of baby Daniel, today , a few days early! Born at 9.29am weighing in at 2.8kg and 51 cm! Welcome to the world baby Daniel! We were supposed to have a play date with your brother and Deqlan before you arrived , but now we can have a play date with you to!
Congratulations to you all , Gods richest blessings, protection, love and happiness and you all, cant wait to meet the little guy!
God Bless and lots of love
Mark Samm Deqlan and Logan

Wednesday, January 21, 2009

Happy Birthday Hayli and Stuart

To two very special people who share a very special day, Hayli and Stuart,
Hope you both have a wonderful birthday today and the best year ever ahead . Hope there are lots of celebrations in store, hope you are both spoilt rotten!
Stay the special people you are, we wish for you Gods richests blessings and answered prayers!
Lots of love, God Bless
Mark Samm Deqlan Logan

Our Scottburgh Holiday

finally after 3 weeks of trying to get the tooth out, Logan just pulled it out on 9 Jan!

now its your turn Mama


Deqlan took a great liking to this couple playing with a ball and bat on the beach and he tried to play with them for 15 minutes and eventually i had to take him away screaming cause he wanted to stay and play!
Brother and sister chilling in the sand Logs and I
Deqlan and me
dada and Deqlan - he really didnt want to go home!
Logan and Dad on our last visit to the beach before coming home
the most stunning photo of just Deqlan and Logan- i had to take the photo real quick as you know, Deqlan doesnt sit still!
us three!
Deqlan and Mama
Good as gold, for at least a minute or 2!
our boy sin blue on one of our shopping trips to the scottburgh mall
walking around croc world, Logan had an absolute ball, Bev gave her a great lesson on crocodiles before we went so she was very prepared
swimming buddies

Conrad and Logs going for swim - well at least trying to, the sea was way to rough that people were only allowed to get knee deep, we saw several people being silly and baywatch scenes playing out in front of us!
The best place to sleep, on the beach , with the cool ocean breeze, the sound of the sea, on my mamas lap...

instead of a dummy , Deqlan took a real liking to Logans shoes, there is a plastic bit at the back that he loves to suck on, and this actually put him to sleep!
sleep time
i cant believe i actually got mark to smile for a photo so i had to put this on!
i love this photo, pure joy
the spectacular view from Sophies house! thank you so much Sophie for letting us enjoy your beautiful home, we cant wait to go again
Logs shoe in Deqlan mouth, again!
what a beautiful day, what a stunning holiday
my boys
best friends
how grown up has Logan gotten? What a lovely personality she has, so caring and thoughtful
taking Dad for a walk, we couldnt actually put our towels and stuff fast enough, as soon as we got to the beach, Deqlan would grab our hands and just pull us to get into the sea- he has no fear for the sea, its a definite love, my little surfer boy!

Deqlan was delighted to find this train ride at the local shopping centre. He kept wanting to go back and even tried to get another little girl off the ride so he could go again!

enthralled with Teletubbies eating tubby toast, one of Deqlans favorite dvds
i think my favorite photo ever of Logan and Mark

Deqlan has really warmed up to Logan and even went to her a few times to grab her by the hand to sit her together with Mark and I - he understands the four of us are a unit and we should all sit together, to sweet to see

keaton enjoying Logans jet ski
im still hungry Mom!
smiley boy and me!
Keaton really became best friends with Logan - they love each other and his entire face lights up when he sees her, they had loads of fun together and i am sure loads more to come. Logan is fantastic with him and walked everywhere with him and tried to make him laugh every moment of every day

our family
i could ask for nothing more.....

tired boy!
the kids enjoying building castles, actually the boys enjoying eating sand
idols promoting the new season at Scottburgh beach, i was tempted to give it a go, but changed my mind,my throat wasnt warmed up properly! ha ha ha ha

enjoying the beach, you can see how muddy the sea was - from all the rain, the rivers flowing into the sea, bringing lots of mud with it, another day of not swimming!
please meggie help me get this tooth out, i want the tooth fairy to come while we are on holiday! meggie really tried, every night....
Keaton LOVED this tap and hosepipe
how gorgeous is this smiley boy?

Conrad giving Deqlan a good tickling
keaton 'the hosepipe boy' takes on deqlan the 'tubby toaster'
Uncle Ken giving Keaton a good tickle
a beckham in the making?

a family celebration! Uncle Ken, Aunty Jen & Jeran stayed in Umhlanga over the holidays and came through to celebrate Christmas, The New Year and of course jerans great matric results, was womderful to see them at our home away from home
Aunty Jen enjoying some 'tea'!
Jeran playing with Keaton - i tell you my cousin is amazing with kids, he loves them , but i think they love him more!Jeran , i told you , you can move in with me anyday!
Been there, broken that!

Aunty Jen and Keaton

our singing surfer boy
what bliss, Keaton would have stayed here the entire day if we let him
a beautiful day at the sea, we only saw dolphins on new years eve though..
my loggy bear
the view from Sophies house to the beach on New Years day - it was unbelievably crowded, glad we spent the day at home!

people came in their droves to get to the beach for new years
our first trip to the beach for the holiday
Malakai enjoying his gymini

beautiful soldier
Malakai in his finest for the New Years Day celebrations
i lOVE sand
Darryl taking Logan for a swim on the only day she could actually go deeper into the sea, shame
my favorite place in the world, on the beach, with the sea splashing on my feet
Meggie popping the champagne a few seconds before midnight on New Years eve
To 2009, a year we pray for continued health and healing for Deqlan, for love and laughter and true happiness, and the cure for neuroblastoma and childhood cancer
Loren Megs and I , this was at 11pm when all the kids were eventually in bed, we had just finished enjoying a delicous Conrad potjie- you can see we are all mommies now, as soon as we said our Happy New Years, off to bed we went! We not used to staying up so late anymore!
Was great to have Loren and Darryl join us for new Years, and it was a gift to spend some quality time with the gorgeous mr Kai who was full of smiles!
Mr and Mr Guiness
Meggie and Conrad, i love this photo!
beautiful boy

Conrad and Darryl started the 'tea' drinking tradition
Happy New Year!
waiting for some supper!

Hello Gorgeous! Look how strong Malakai is!

Happy as can be in his bouncy chair. this was a winner for Deqlan to when he was smaller!