Sunday, May 25, 2008

A day of thanksgiving

Today, exactly 1 year ago, 25 May 2007, Deqlan was diagnosed with neuroblastoma

We have decided to make today a day of thanks giving for what has happened to Deqlan and our family in the last year - most importantly we are thankful for Our Lord healing Deqlan and that he has no evidence of disease. We are thankful that He lead us through this year, and picked us up on days where we did not know where to turn next, I asked the Lord this very day 1 year ago to give us the shoes to walk this journey , and that He did and more. I am thankful for Dee and my Mom that went out of there way to make everything is convenient and as easy as they could for us, stopping at nothing to esure Deqlans happiness and that he has the best possible environment to heal in. For every single step and day that my Mom has walked this journey with us. For Conrad, Meggie and Keaton for being their every step of the way , taking every chance to see us and support Deqlan while in hospital, for running errands for us and taking phone calls when we did not have words for all who called to find out about Deqlan. For Great Grandpa and Great Nan for making us wholesome, nutritous food for Deqlan to enjoy and mostly for your prayers and cheery phone calls and complete faith that Deqlan would be fine. Thankful to Logan, for being the most amazing sister in the world, at the ripe old age of 6 , her whole world to be turned upside down but not being able to see her brother for over 1 year now. To Aunty Rene and Uncle Quintin for taking Logan on the weekends and making her feel loved and special.For Kevin and Louise, Tyler and Gaynor who where there to support Mark. For all the gifts, calls, messages, emails, visits and above all prayers.To each and every single one of you , for making a difference in Deqlan and our lives. For reading our blog and leaving messages of inspiration and encouragment and support. For all our of you for following our journey I am thankful for the amazing family and friends , new and old, we have in Deqlans prayer army and for the lessons we have learnt along the way. The families that are in the same boat as us, that offered invaluable information and advise, and where just there to listen. For the prayer groups that formed around the world to pray for our soldier. For all of you who continue to help in all the projects we set out on to help fellow cancer warriors. I am thankful for Dr Dejager and all he has done and continues to do for Deqlan, for all the medical staff that have helped us and touched our lives, especially Dr Muller who resolved all the problems Deqlan encountered from his previous surgeries and for Prof Beale for the AMAZING job he did with removing the remainder of the tumor. We are grateful for the wonderful follow up results we have recieved, and pray that we continue to recieve them. I am thanful for the Nuns and volunteers that popped in while Deqlan was having chemo to say a prayer and give an encouraging word.We are thankful for those of our friends that made us dinner! I am thankful that Deqlans immune system has stayed so strong and that he had no major side effects from chemo. I am thankful for our amazing parish, for all their love and support and above all, their prayers. We are thankful that God trusted us with Deqlan, and that Deqlan chose us to be his parents. We are thankful that Deqlans speech and occupational therapy are helping him and that he learns something new each day. We are thankful for every smile, every giggle, every hug, everytime Deqlan takes our hand, every word he so lovingly says, every cuddle, every single second God has given us with Deqlan is a precious and priceless gift.

Nanna compared Deqlans journey to a bridge of faith that has been built of the last year - we had to get to the other side, and every prayer,every word of encouragement , every positive test result, each time God lifted us up to carry on, each one of you have been the wood, the nails, the rope , that helped build the bridge and help get us to the other side, thank you.

To Our Darling Boy Deqlan , you are our hero - there is not enough times we could say we love you, their is not enough space to show you the hugeness of our love for you . We are so very very proud of you. I sit here today and think back on the last year of what you had to go through and endure, and we are in awe , as most people would never even have to go through 10% of what you already have. I can not explain how this day 1 year ago,changed our hearts and lives forever - at the time we where shattered, completely and i dint not know how we where going to put all the pieces together again. But The Lord , showed us how, He picked up all the pieces, He shone the light on the path He had laid out for us, He gave us the shoes to continue on this path. Know, that if Dada and I could have taken this away from you - we wouldve it a heartbeat - there is no greater pain i have ever known, then watching you in the hospital bed , in pain, with toxic chemicals flowing into your tiny body ,not knowing what tommorow held - But Our Lord Healed you my Darling Boy , and we pray he continues to have mercy on you and on us and spare you for many ,many , many more healthy and happy years. We pray to the Lord for the absolute honor and privilige and gift of seeing you go to play group, make friends, learning how to ride a bike ( not a motorized one , please!) , going to primary school, being in the school play, going to watch you at sports days, getting up to mischief with Logan and Keaton, going to high school, falling in love, travelling, studying, getting married and having children and grand children of your own - coming to church, and being an inspiration and help to others who have gone through the same journey as you have. You are our hero, our inspiration, our universe and everything in between - we are honored to be your Dada and Mama, we are so proud of you and love you more and more each day our beautiful Deqlan.

Please say an extra special prayer this week for our soldier, as we recieved our test results on Friday the 30th of May.

Deqlan continues to thrive and do so well - he loves paging through his books, finding his favorite pictures of frogs and zebras and then he runs to show mark and I , with such a proud look on his face! His eye contact is fantastic and has improved tremendously over the last week.Deqlan is also a lot more verbal - there are lots of words we are still trying to understand and will probably have to take a course to understand, but its music to our ears - nothing more beautiful then hearing Mama or car or kitty with such love and enthusiam. Dada has seen Deqlan clap twice while watching a specific clapping song on his beloved Clamber club dvd - we are so excited about this development to. He even tried to feed me with a spoon and he tried to brush my teeth this is fantastic for imaginative play and I cant well to tell the girls on tuesday - they are going to be so excited.

Our solider continue to have a bit of teething trouble with the last tooth that is trying to come through - he wasnt a happy chap yesterday and he cheeks turned a very bright red - but they are much better today and he seems a lot more content, shame, its nearly through my boy!

Thank you to Nix and Darryl for the stunning pjs! They are gorgeous and i can see some very happy little boys and girls proudly showing off their cool skateboard and monkey pjs - thank you so much guys for all you have done and continue to do for us, you are amazing friends and i pray you to recieve many blessings!

Today, is also the day that The Stanford family leave south africa to start their brand new journey in Australia - we are going to miss you like crazy - but we are so proud of you making such a huge decision for your children. Go and spread your wings and take on the world! Make the most of it and as we said yesterday, this is not good bye, 'its see you later mate!' We love you guys and stay the amazing family you are - Shaz, you have been our friend and sister for over 14 years and we have been through so much together - i am going to miss you my dearest friend, always know you have someone in South africa, praying for you to have the time of your life and sending you lots of love.

I also wanted to thank Kevin and David , who helped us raise the funds for Ruan , at the golf day last week - thank you so much guys for stepping in and being so enthusiastic about helping us save our little friend, thank you.

The Baby Therapy centre asked me to write an article on Deqlans journey, to encourage other parents at the centre - i thought id post it today for you to read

Have a great week, please , please continue to pray for our soldier and for his results to be NORMAL on friday and that he remains NED ALWAYS.

God Bless, all our love, and thanks for all you have done for Deqlan, his fellow warriors and our family over the last year , we shall always be there for all of you to
Mark, Samm & Deqlan


We were blessed with the most beautiful baby boy Deqlan on the 11th of September 2006

He stole our hearts and we instantly fell in love with this gift from God

Deqlan was a happy and healthy contented baby, except for a bout of colic which he soon outgrew. He reached his milestones month by month and blossomed into an active toddler.

A worrying bruise on Deqlan’s eyelid, which cause remained unknown, could not be solved by our then paediatrician or an eye specialist. Within the duration of 1 month, we insisted on a scan to get to the source of the cause of the bruise

The very last thing I expected to hear was, “we think your son has neuroblastoma, a cancer”. Neuro what? I remember just feeling blank and cold and heartbroken - nothing I could do or say was going to change this for my baby boy.

We were lead to a fantastic oncologist within 3 hours of having done the scan, Dr De Jager, who took very good care of Deqlan from the very first moment we met him.

The next week and month that followed were the worst of our lives – Deqlan had to go through several procedures, scans and tests to confirm the diagnosis. It was confirmed that Deqlan has stage 4 neuroblastoma. The main tumor started close to his adrenal gland and had spread to behind his left eye and 7 other areas of bone in his little body. A haematoma, a blood clot, formed in his intestine after the biopsy of the tumor was performed. This delayed chemotherapy for at least 1 week and during this time Deqlan’s eye bulged out of the eye socket and turned black and blue. After our first session of chemo, Deqlan became terribly ill, and it was found that an incisional hernia had occurred during the previous surgery he had to repair the first blockage. So the start of this journey for Deqlan was extremely tough – he still managed to laugh and smile and give us endless amounts of love each day.

We have always believed in Our Lord and Saviour, but this journey cemented our Faith in the most amazing way – God carried us when I didn’t think we were going to get through the day – He lead us in decisions we thought we would never have to make or even think about – He ultimately healed our beautiful Deqlan.

Deqlan, means full of prayer – A prayer army was formed for Deqlan and people from all walks of life, all around the world, stood firm in their faith and prayed for Deqlan’s healing. The amazing family and friends and lessons we have learnt along this journey are an absolute gift.

After 11 rounds of chemo, 4 surgeries, countless scans and x-rays, blood and urine tests, Deqlan was announced to have NO EVIDENCE OF DISEASE on the 16th of January 2008. What a wonderful God we serve, what miracles He has performed in Deqlans and in our lives.

Deqlan’s immune system was basically wiped out during chemotherapy and the little vaccinations he did have at 8 months were also destroyed by the chemo .

We had to avoid public places, people, children, any sick person, even our pets and Deqlan’s half sister. We had to ensure that the house was as clean and germ free as possible. We did everything we possibly could to create the safest environment in which Deqlan would recover.

Because of these restrictions, Deqlan could not mingle with children, as the risk of him picking up something from them was far too great and could jeopardise the next round of chemo, or even his life.

A few months after chemo was completed and Deqlan pronounced NED, we decided to focus on other areas of Deqlan’s health and well being. His speech was not where other little 18 month olds were and he did not have a great concentration span, so could not sit with a toy for a long amount of time.

In a few short weeks of occupational and speech therapy sessions, we have seen great improvements in our soldier,. From saying one word, he is now saying quite a few and he can sit and play with his favourite toys, namely cars, for a longer period of time. He is more expressive and generally improving as each week goes on. We have great hope and faith that working together with his therapists, Deqlan will continue to thrive and reach his full potential.

I would first of all say that to get through a journey like this, you need to have your Faith in God -with Him, all things are possible.

We are totally blessed to have the most amazing support structure I could ever imagine.
Within the first ten minutes of Deqlan being diagnosed, my mom said she would be with us every step of the way, and that she has done and more. Between Mark, (Deqlans dad), Nanna and Meggy, (Deqlans godmother and aunt), I had someone with me around the clock, even if they watched Deqlan and I as we were sleeping, they never left us alone in those first few dark and worrying days. Deqlan’s Nanna attended every test, every day in hospital, every chemo session, every surgery, every celebration as we received great news. Nanna still continues to keep to her word, by attending every single speech and occupational therapy session with us.

The other huge support structure I had was the other parents in the same boat as Mark and I – parents who understood what we were talking about when we spoke about VMA tests and MIBG scans- people who understood the fear and anxiety, or absolute joy of hearing your child is NED. You can chat to the doctors, you can read in books and on the internet – but meeting families in the same situation and getting support from them, is something I will always treasure and want to give back to anyway I know how.

The most important lessons I have learnt from this, is that God is great and He gives to those who ask in Faith.

The other is not to take anything for granted. To treasure each day, each moment, each giggle, each word, each hug. Forget about things that don’t matter and focus on what does. There is no greater gift I will ever receive, than my beautiful warrior, Deqlan Ross Higgins.


Anonymous said...

To my dearest precious Deqlan,
Words cannot describe the absolute joy and love and pride I feel for you today and every other day! You have endured so much in the past 365 days! I too remember this day exactly one year ago sooooo clearly! Although I push the memory to the farest place in my mind and store it in a very tight sealed memory box I cannot help but acknowledge that today the 25 May 2008 you have changed those memories from the darkest of darkest times to the most wonderful and joyous times of my life! In one faith building year YOU have taught me the meaning of FAITH, YOU have taught me the meaning of BELIEF, YOU have taught me the meaning of HOPE, YOU have taught me the meaning of FAMILY, YOU have taught me the meaning of FORGIVENESS, YOU have taught me the meaning of HUMILITY, YOU have taught me the meaning of COURAGE, YOU have taught me the meaning of NEVER TAKING ONE DAY FOR GRANTED, YOU have taught me the meaning of HONOR, YOU have taught me the meaning of STENGTH! But above all you have taught me the true meaning of JOY, LOVE and HAPPINESS!
I am also so thankful for what we have been taught this past year and for all the paths that we have crossed and all the new friends we have made - we are all stronger people for it!
I will NEVER EVER forget the day I told your beautiful mommy that she must think of the chemo running into your little body as the HOLY SPIRIT running through your body! From that moment every time I saw what you had to endure I praised God that he was with you every step of the way and that he was healing you - IN HIS WAY AND IN HIS TIME!!!!!! My Deqlan you indeed have the best parents in the world who would do ANYTHING for you and you love you so unconditionally and you are their world - I do believe that you were first in line when you choose your parents!!! Samm and Mark - I SALUTE you both! You are both the true meaning of INSPIRATION and MOTIVATION and OPTIMISM and HOPE and FAITH!
Nanna and Grandpa- my mom and Dee, your beautiful grandparents - I do not believe that Samm and Mark could of got through this without of coarse the grace and mercy of our Lord but also your GUIDENCE, ADVICE, POSITIVITY and LOVE! Mom (Nanna) I admire your strength and courage and your absolute adoration of your daughter and grandson!
To the staff and doctors who have treated and nursed my precious Godson - no words could ever thank you enough for your dedication and care!
To your Great Grandparents - my grandparents - thank you for all your prayers and love for Deqlan! We believe whole heartidly that you have a direct line to our Lord!
To my Logan - You have been an absolute star! God will reward you my little girl for all your PATIENCE and UNDERSTANDING! We love you dearly and cant wait to spend more time together soon! We have missed you soooo much!
To my Deqlan - you are the sunshine of all our lives and you are truly a child of GOD - who has big plans for you! Each and every day I look at you, I say a silent prayer in my heart knowing that our Lord is listening and I thank him each and ever day for all the lessons you teach me! I am so extremely PROUD of you my boy! I look to you and continue to look to you for courage, strength and wisdom. You are so small and yet you have so much life experience that I learn from you each day.
Well my boy, all thats left to say is that I each and every day spent with you has been an ABSOLUTE HONOR!!!!!!!!!!!!!!!!!!!!!!!!!!
I know that with the mercy and grace and love of our dear Lord that you will remain NED for all the days of your life! NED - NOW ETERNALY DEAD!!!!!!!!!!!!!!!!!!!!
My dear Lord and Jesus Christ - I serve and will continue to serve you for all the days of my life, Thank you for carring this family through this year and for all your love and care and miracles you have shown this family! I love you father!
To our precious Mother Mary - thank you for alwasy comforting Samm as you know as a mother yourself that she and Mark have walked the bumpiest and hardest road of thier life and with your grace and love they have reached their destination - A place where they will forever be a happy and joyful and thankful family!
I love you my sweet boy! God bless you and keep you safe from all harm!
All my our love, Conrad, Meggie and our precious Keation

Anonymous said...

Samm and Megs. Your post and message has left tears in my eyes this morning. Your family is truly one to be admired, and a shining example of faith, that if we all had a little bit of, would make the world a better place. Samm, you and Mark have been amazing this year and have given effortlessly to those who needed it...even in all the worry's of your own world, you continued to help others around you. We continue to keep you all close to our hearts, and keep praying that Deqlan's results will remain NED on the 30th June. We love you all dearly. Please give big love and cuddles to all. We love you guys.

Don, Sam and Mia xxx (and 'Bump')

Anonymous said...

I cant believe it has been a year!!!! Deqlan i am so glad you are looking so healthy and happy!!!! I remember reading your blog for the first time and crying as i knew as a mother what your mommy must of felt like...... you have no idea how your story has touch so many lives. I know that i will never look at my children the same.....i am so grateful that they are mine and that God has blessed me with them. you helped me slow down my busy life and stop and look at the small things and enjoy the everyday small things in life.....enjoy the small things in life as one day you may look back and realise they where the big things!!!!

You are still in my prayers and i hope that you will be blessed and healthy forever. Samm you really are a good example of a mother, sister, daughter and friend may God bless you and your family.

debbie benniman

Loren Stow Photography said...

I cannot believe a year has passed! It is amazing what a journey your family has travelled! Despite the overwhelming evidence that the past 12 months should have been the 'worst' of your lives, I have seen (from a distance) evidence of a Journey of the Souls, into the darkness you all brought light, from the pain you sought reason and purpose.
I am amazed and inspired by the Spirit and Vision that your family has...
Well Done Deqlan - you are a true little warrior!
All my love and absolute respect to Samm, Mark & the rest of the family!