Deqlan today, Praise Our Healing Lord
Deqlan 29 June 2007- after 2 round of chemo, his eye started to improveIt is my honor to honor our beautiful boy Deqlan Ross Higgins
Deqlan was born a beautiful healthy baby boy and developed right on track with no illness - at age 7 months we noticed a yellow bruise on Deqlans eye lid and i remember thinking of a million reasons for the cause of the bruise - from hitting him self with his dummy , to bumping his head against the camping cot, to a new food causing an allergy
We decided to look into the mysterious bruise, which now looked orange after two weeks, and we were told by our then doctor that it was conjunctivitis - we knew that wasnt the right diagnosis. Another week went by and the bruise started to look a little purple - so we went to the eye hospital - the doctor there had not seen a bruise like it before, but told us it was probably a blocked tear duct and to give it a month to see if it improves - the next week Friday, 25 May 07 , we decided to take matters in our own hands and demand a scan of Deqlans eye - thats the day our lives changed forever
The Mri scan was massive and loud, ear piercing frequencies bouncing through Deqlans body- i was very very worried but had no idea what was coming next, thank The Lord My Mom was standing with me whilst the second part of the scan was run.
I was totally and utterly blown away when the doctor came into the scan room telling us they found a big tumor near Deqlans adrenal glad, which had spread to several parts of his body, including behind his eye. His guess was neuroblastoma - i just remember feeling like i wasnt in my body and sitting down on the chair. Both mom and i were in tears and rushed out to the reception area of the hospital not knowing what to do next - i managed to pull myself together to phone mark and told him to get to the hospital asap - he was angry with me for not being able to tell him over the phone what was going on. My mom and i managed to piece the details together for Mark when he arrived. I will never, ever forget the look on Marks face,ever. I will also never forget my mom telling me should would be with us every single step of this journey , no matter what
Dee and Meggie joined us at the hospital and by the grace of God we were lead to the best oncologist ,Dr De Jager 2 hours later.....
We sat in his office for nearly 3 hours as he tried to explain what neuroblastoma was, where he thought Deqlan was stage wise and what the treatment plan was - Mom did most of the talking and asking questions as she was the only one with a medical background.... what an amazing doctor, what a kind heart, what a love for the kids he works with, Deqlan and us as his family trusted him straight away
After many scans and tests and tests and biopsies, Deqlan was diagnosed to have stage 4 neuroblastoma, with bone and bone marrow involvement, non amplified.
It the next few months a whirlwind of treatments and surgeries unfolded - including two uncessary surgeries for mistakes a surgeon made resulting in blockages and herneas
Deqlan went through 11 rounds of chemo, countless scans and blood tests - but most important of all many many prayers and may prayer warriors who joined Deqlans prayer army and stood firm in faith with us, following every step of the way
Deqlans MIBG scan on the 7th of November revealed nothing!! absolutely nothing lit up!
We found an amazing surgeon Professor Beale who removed the remainder of the tumor which started close to his left kidney and was wrapped around some very important arteries and vessels - Deqlan recovered very well and the results of the biospy performed on the remainder of the tumor showed that all was ganglioneuroma , all dead tissue!
A bone marrow biopsy was performed in Jan 2008 and on 16 Jan 08 we got the call to say it was clear - this was the day that marked Deqlan having NO EVIDENCE OF DISEASE!!! What a celebration it was and continues to be!! Deqlan has been NED for nearly 20 months.
We continue to go for check ups every 3 months where an ultrasound is done on Deqlans abdomen, as well as blood and urine tests. They all continue to show normal levels , praise Our Lord! Our next check up will be the beginning of Dec and then we will move to 6 monthly check ups!
In October 2008 Deqlan was diagnosed to be on the Autism Spectrum and we are working very hard on pulling Deqlan through the window, which we are so positive about! We see improvements in him EVERY DAY! He has started talking and playing and interacting!!!
We thank you for following Deqlans journey, for praying for him and all the support you continue to shower upon him - please let your prayers never end!
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7 comments:
Amazing little fighter. I can't imagine getting that news. With Jax everything really happened right in front of us. Keep going, little man:)
hello,I will always pray that Deqlan remains NED for the rest of his life,he is a true fighter and Hero....about the entry you would like to do about ali, you can certainly do whatever you like...God bless you and your family always,
take care...
rhenda,ali&family
My friend, I feel very emotional reading this post! To think what you have come through, and what Deqlan has achieved in his little life. I said it many times before, and I say it again...I salute you and Mark! The strength that you showed, the faith that you kept (and continue to keep), the pure and utter love and determination is so evident in everything you did, and continue to do for Deqlan to lead a normal, happy, healthy life. God bless you all my friend, and I love you more than words can possibly say.
Don, Sam, Mia and Liam xxxx
Hi Samm, I'm reading your piece on Deqlan and I cannot stop the tears!! You and your family are an inspiration....I can just imagine what you must have gone through with the diagnosis and seeing your little boy going through operations and chemo....but you have and amazing family and SO MUCH faith!!! I cannot wait to see Deqlan grow up....it is my highlight in the morning to read your blog & all the new things Deqlan is saying and doing!! Thank you for keeping us inspired by the lessons you teach about faith and persistence and patience and most of all LOVE!!!
Talk again soon!
Nina
Tribute to a Most Precious and Treasured Family,
Whilst reading your tribute, I recalled the very emotions I experienced during all the events described by you. Sharing your story so tenderly, your experience, your pain as well as your triumphant joys and victories, is courageous, brave and truly inspirational.
It's the amazing story of hope, of faith and of a love that is immeasurable, eternal and unconditional. It is the story of a miracle.
What you chose NOT to share is the very tribute I wish to offer to you and Mark.
I salute your ACCEPTANCE & TRUST - the devastation, fear and terror of first hearing "the diagnosis" was replaced by unconditional acceptance of, and complete trust in, God's will; there were no questions to God of why Deqlan had to be THE ONE in 100,000 children with neuroblastoma; you knew God's plan was perfect, intended to never harm, but always to provide hope and a future
I salute your DIGNITY & GRACE -
in your total surrender to God's will, whilst the levels of your faith, hope and love increased daily and which still achieve heights beyond human understanding
I salute your STRENGTH & COURAGE -
fortified by numerous events throughout your journey, how you always found ways to deal with the many and sometimes unexpected challenges you faced, one of which included how you translated your initial fear of Deqlan's chemotherapy into acceptance of this as a vital part of his cure,through your decision to view the chemotherapy entering into Deqlan's veins as "Holy Water";
your courage was reflected in the fearless decisions to challenge the doctors and the nursing staff whenever necessary; you always acknowledged that the seemingly endless supply of your strength during these times came from the special relationship you have with your compassionate and merciful God
I salute your SACRIFICES MADE -
through your non-negotiable principle of personally being with Deqlan throughout his journey; the many months of long, anxious days and lonely nights spent with him, in isolation at times, which included waiting outside the theatre, being in the wards, intensive care units, in radiological departments; during these times he was either recovering from numerous surgical interventions, and/or having chemotherapy or scans and sonars; your selfless passion ensured that Deqlan's safety was paramount and that he always felt so very loved, secure and never alone; without hesitation, your lives were "put on hold", your own needs replaced by new priorities
I salute your COMPASSION, GENEROSITY & KINDNESS - born of your own experience and which you currently utilize so tenderly to help relevant organizations and fellow patients and/or their parents and families; you are a true blessing to all those who seek your wisdom,understanding, support, encouragement and your love and experience your hope and faith in His word.
I salute your DEDICATION, DEVOTION AND COMMITMENT - which knows no boundaries in being the most extraordinary parents to "our" extraordinary and beautiful Deqlan
I salute your FAITH & HOPE & LOVE- which your experience has forever engraved on your hearts, minds, souls and spirits; your unwavering faith, indefatiguable hope and eternal love will continue to ensure victory over any challenge
I salute your WISDOM - just one of the greatest lessons you have shared with us as a result of your journey, is the realization of the need to live each and every moment of our lives to its fullest potential; to seize each day with gratitude and never to take anyone or anything for granted
GOD CHOSE YOU FOR THIS EXPERIENCE. YOU ARE SPECIAL AND YOU ARE DEARLY LOVED. I celebrate your miracle story. I celebrate you.
With all our love,
Dee & Mom/Bev
Our Precious and Adored Deqlan,
OUR BRAVE,COURAGEOUS AND VICTORIOUS WARRIOR
It is an absolute honour to be your grandparents. You are our treasured blessing from God. We salute you, courageous warrior and HERO SURVIVOR !
The name Mommy and Daddy gave you - Deqlan - means "Full of Prayer" or "Prayerful" and how you have personified this is bringing us all closer to God through prayer and worship. How apt is it that you also have your very own "Prayer Army" which will forever continue to lift you up in prayer, especially in thanksgiving for your eternal NED status.
You have taught us our greatest lessons in life; this you have achieved without words or deeds. What you have experienced, many humans will never come close to in their entire lifetime.
GOD HAS A VERY SPECIAL PURPOSE FOR YOUR LIFE. YOU HAVE COME WITH A MISSION. YOU ARE UNIQUE, YOU ARE SPECIAL AND YOU ARE DEARLY LOVED.
With all our immeasurable love and pride and joy,
Nanna and Grandpa
Thank you Samm for sharing the difficult story of Deqlan's initial dx with all of us...I am in tears as well, not just from imagining all that little Deqlan has gone through-but from happiness as I hear the strength and faith in God you rely on every day to keep you from getting discouraged...God is using you to help others (me included!) :-) and I am proud to call you my friend.
Always praying,
Debbie & Connor
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