Monday, June 11, 2007

Sunday, the 10th June 2007

All glory and honour to You almighty God! We believe we have been blessed with our first miracle in Deqlan's healing, from our precious Lord Jesus! After a very frustrating day in the ward, the paediatric oncologist arrived at about 19h00rs and spent about an hour and a half , checking Deqlan, answering Mark and Samm's numerous questions and then explaining the histology results of the biopsy.

The first miracle is that Deqlan's neuroblastoma is NOT MYCN-amplified !!!!!! When we consulted with the oncologist the first time, he was of the opinion that Deqlan's form of cancer was going to be "amplified" due to the size of the primary tumour on the inside of the left adrenal gland and the speed with which it had spread to bone. Very simplified, and according to available research interpretation, absence of the MYCN oncogene, as is the case with our precious Deqlan now, means firstly that his "risk" has been reduced from "high" to "intermediate" and secondly that his prognosis is viewed as improved.

Of the 3 bone marrow specimens analyzed, one did contain cancer cells. This presents a challenge to the therapy but we are hopeful and have the greatest faith and trust that with God's help and direction, the chemo will deal with this and limit and halt further spread. We still are awaiting the result of what is known as a Shimada classification of the biopsied tumour part. It can either be favourable or unfavourable, and we are hoping that Deqlan's is favourable in order to improve his prognosis even further. The oncologist appears optimistic that Deqlan's form of neuroblastoma should respond positively to chemotherapy, with appreciation of the fact that the process of healing is indeed a long one, with chemo at the start of this very long journey. Included in this journey could be surgery to remove the bulk of the primary tumour and then radiation. However, we understand from the oncologist that he cannot guarantee the efficacy of any therapy. BUT WE KNOW however that with our Lord as the true head of the "medical team", HE DOES GIVE US A GUARANTEE FOR HEALING DEQLAN THROUGH OUR FAITH, HOPE AND TRUST IN HIM. Mark and Samm, as well as the whole family, breathed a sigh of relief at the good news of the non-amplification, and suddenly the beautiful colours in God's world have become a whole lot brighter!

The paediatric surgeon saw Deqlan late morning and ordered the TPN preparation (total parenteral nutrition) - which essentially is a solution which meets all nutritional requirements in those who are not able to eat or drink, and in those who require immune system strengthening, especially prior to chemotherapy, amongst its many other indications. This became necessary as Deqlan's nasogastric tube was still draining excessive quantities of gastric and intestinal fluids and because Deqlan was nil per mouth. Fortunately, it was not necessary to subject Deqlan to the trauma of putting up yet another drip in a central vein to administer this substance (as it cannot be given into peripheral veins which are usually the sites for intravenous drips). Instead his porto-cath (inserted during last Monday's surgery for the purpose of administrating his chemotherapy) was used for infusion of the TPN.

It was suspected that irritation caused by teething of the two front teeth also caused Deqlan further discomfort during the day. He however, still enjoyed watching his Baby Einstein DVD's, playing with Thomas the Tank Engine and his Mae Mae toy. Megan and Conrad, Nanna and Grandpa all tried their best to get a smile - our patience will bring its reward in good time. Deqlan is frustrated as he wants to crawl and explore but the nature of the ward and the tubing attached to him does not accomodate this. Samm and Deqlan (followed by a trail of dripstands and drainage bags) spent some time in the warming rays of the mid-morning sun outside the reception area of the clinic to breathe some fresh autumn air and escape the confines of the ward and both enjoyed this pleasure (which many of us take for granted, not so ?) immensely.

Nanna has the honour and privilege of spending yet another night with Samm and Deqlan in the ward tonight - very precious, priceless and unforgettable moments these.... and what a blessing to be able to observe mother and son when they sleep, or to be able to assist them when they wake.

Deqlan is still getting analgesics for the pain. By very late evening, much to Samm and Mark's relief, settled down into a relaxed and peaceful sleep in Mommy's arms, despite the metres of tubing attached to him, from the porto-cath, nasogastric tube and intravenous drip lines, which restricts his movement and comfort.

Initially Deqlan was only supposed to be in hospital for 2-3 days after his surgery, but the problem of vomiting oral fluids and the accumulation of intestinal fluids has necessitated him to remain in hospital for a total of 7 nights to date. On Monday, and possibly also Tuesday, further TPN infusions may be necessary and thereafter, oral fluids will be restarted again, from water to milk and Deqlan's tolerance for this will dictate when he will be able to be discharged. Consequently, it would now appear that his first chemo session will have to be delayed until Monday next week, 18th June. The oncologist is insisting that Deqlan should be fully recovered before chemo starts and is not unduly concerned about the delay of one week for this reason.

The final frustration of the day came at the stroke of midnight when Mark left the hospital after being in the ward with Samm and Deqlan for 24 and a half hours only to find his car battery flat in the parking area. He was rescued by the AA and all is well.

Another celebration in our lives is that Deqlan will be exactly 9 months old when the clock strikes 08h17rs on the 11th June 2007. What better way to reach this milestone than with the great news of the first miracle in Deqlan's healing, with one of our prayers being answered. Sacred Heart of Jesus, we place our trust in thee, all for Thee O Lord, O our Jesus all for Thee.

Mark, Samm and Deqlan and the whole family thank you sincerely for all your wishes, encouragement and prayers, and know that the strength of the "prayer army" out there, as true warriors for and in Christ, is formiddable and invincible.

Posted by Bev Bourne

6 comments:

barbara said...

PRAISE THE LORD!!! what WONDERFUL news!!! All praise glory and honour to Jesus. We rejoice with you all and look forward to many more miraculous answers and good reports. Congratulations to Deqlan on his 9th month special day and we believe that he will be a healthy strong 19 year old with only memories of this illness one day!!! Go well, and God BLESS you.

Anonymous said...

Hi all. Thank God for the good news received. I am sat at work wanting to cry with relief. This is amazing news!
We will continue to keep Deqlan in our prayers. Edgar has added Deqlan to a prayer list at church. He has also been added to a prayer list at Richards Bay Baptist Church and a friend of mine in Klerksdorp has started a prayer chain at her church. We love you guys and admire your strength and courage more and more each day. Please give Deqlan a big kiss from us on his 9th month special day. Love Sam x

Anonymous said...

Hi Samm,

Happy 9 months Deqlan.I hope he is having a good day, please give him a hug and kiss from us!
Thank you so much for keeping us all up to date, I am so happy that you have received this good news, we will keep praying.
Love Jelenka, Neil & Gianna

Anonymous said...

O God,

Strengthen in them the healing powers You have placed within us all. Guide the hands and hearts of those who are entrusted with their care.

May the knowledge of Your love, O God, as well as our love, give added hope to them and to their dear ones. May they find even greater strength in the assurance that our prayers are linked with theirs.

Thinking of you guys constantly!

Always in our prayers.

God Bless

With love
Kobus, Bron & Matt

Carol said...

Dear Mark, Samm and family,

I was so saddened to hear the news but just want you to know that you are in my thoughts and prayers constantly.

I cannot imagine how testing this time is for you all but through your faith your prayers will be answered. I believe that through the grace and mercy of our Lord Jesus Deqlan's precious body will be completely healed.

May God bless and protect you all and fill your days with the comfort and joy of his miracles.

Thank you for keeping us updated.

Love
Carol

Louise, Roelof & Jessica said...

Samm, Mark & Deqlan

I am so saddened that my first communication with you since we have been back in SA is under such circumstances.

Just wanted to let you know that you are in our thoughts and prayers, and we are thinking of you every step of the way.

Hope Deqlan had a great 9 month strong birthday.

You guys are so amazing, and are being so strong. God Bless!

All our love, thoughts and prayers
Louise, Roelof & Jessica