Saturday, June 30, 2007

hooray for Deqlan!

hoorraayyy! the tube is out! we have had three bottles of apple juice and water starting with 40 mls and we have worked up to 70 mls and all has stayed down! so it all looks good ! Dr Muller is very optimistic and has given the go ahead to start with milk at 1800 - but only little amounts at a time - if that goes well we should be able to start solids tomorow!
Deqlan is looking GREAT today and has smiled the most we have seen him smile in the last month and even laughed with me pulling silly faces - the nurses and even Dr De Jager ( who was so sweet to come and visit us again) said he was looking great and returning to his normal self!
He was delighted to have Nanna & Meggie come to visit again and bring all their treats for Deqlan with! Nanna bought two beautiful stack rings and a piano which Deqlan LOVES!!! Meggie found three baby einstein puppets to entertain Deqlan with and a musical set which he has not put down! This beautiful boy LOVES music - just like his mamma, nanna and meggie
We heard that we might be allowed to go home tommorow night and then have Monday at home and start chemo on Tuesday - Thursday - so praying we will have some time at home again - i can count the nights we haev had at night the month of June on 1 hand.....\its a real treat to go home
Deqlan will get vincristine, cisplatin and mixtures to keep him hydrated and his kidneys protected from this round - we hear we will be on our normal room so we quite comfy with that idea Deqlan loves looking at the window at the cars
We are still so positive and optimistic that Deqlan is going to be healed and make a full recovery - even Dr De Jager is optmistic
We know Our Lord is listening to each and very single prayer , thank you for your continued prayers, love and support

Thursday, June 28, 2007

Thursday, the 28th June 2007

hello all our wonderful family & friends
we come to you from the paediatric ward tonight as we have been moved here from icu
Deqlan in great condition, draining still clear and his vitals great , but unfortunately the doctor didnt come tonight so he still has his naso gastric tube in and we are hoping he comes early tommorow morning so we can start with fluids
another reason for the move was that i could also get a bed to sleep in as the nurses saw i got no sleep on the chair next to deqlan last night - so in one way glad we are both comfie tonight , but in another we wont get as much attention from the nurses here as they are alot more busy and the ratio of nurses to kids is more...but we trust Our Lord will give Deqlan a great and peaceful evening
i was ordered home today to sleep for an hour or two and take a shower and get some clean clothes - was lovely to be home for a bit but i missed Deqlan terribly - nanna watched Deqlan for us and had a ball singing and playing with him - he didnt cry at all - but as soon as mar and i arrived back he started crying ha ha ha
our laptop is going in for repairs tommorow and we are hoping to get it back over the weekend so if you dont hear from us you know its cause we dont have it back yet
looks like and we are hoping we can come home on saturday or maybe sunday - at least 1 night we hope before the 2nd round of chemo starts on monday 2 july
Deqlans eye is looking even better today and we are so Blessed to see this miracle happening right in front of our eyes - Our Lord is so great and he is listening to each and every single prayer we offer him
Please continue to pray for our beautiful boy whom we love and treasure and admire - he truly is our hero and i already look up to him in so many ways
We are so Blessed he chose us to be his parents - I thank God every day for this Blessing and I promise to be the best Mom I can be and to look after him the best way I know how
Good Night hope you are all well sleep tight and all our love to all of you
Mark, Samm &Deqlan

Wednesday, June 27, 2007

Wednesday, the 27th of June 2007 (Oh Happy Day)

Apologies for the late update, we have again experienced computer / signal problems within the confines of the hospital and could therefore not post the blog earlier today. As Bev (aka Mom, Mom in Law & Nanna) experienced a migraine today, she left early this afternoon and has subsequently again received her marching orders this evening to go get into bed and get some rest, therefore there will be no award winning piece of literature for today's blog, only our lay terminology and vivid description of events.

Today started out as any other “recent” day, Samm awoke in the hospital bed that she was given for the evening, looking for a place to bath/shower and Deqlan awoke much stronger and more awake than yesterday (he is such a soldier). The drainage of the bile was still substantial and still dark green and it seemed that it was going to be another day of waiting in anticipation for events to take a turn for the better.

Then it happened, he passed a huge "stoole", one of the largest dirty nappies (napkins as some of the nurses call them) you have ever seen, the “Chernobyl” of nappies/napkins. With this occurrence, Mom immediately jumped on the phone, nurses came running, cleaners were summoned and we as parents rejoiced, as this served as confirmation that all Deqlan’s pipes were in working order and we knew it was going to be a great day further.

The bile immediately cleared and became transparent, a good sign, as it means the bile is now filtering through the system in the so called “natural” process and not building up in the stomach waiting to be drained or projectiled. The doctor seems happy with his progress at this stage and mentioned that if this positive trend continues, Deqlan will start the process of fluid intake from tomorrow, beginning with clear fluids, then small amounts of milk until he reaches his usual intake during feeds.

Deqlan is in much less pain and in very high spirits this evening, smiling, laughing, playing and even passing the occasional “wind”. We are ecstatic that he is on the fast track to a speedy recovery. Hopefully he rests well, in order for us to also rest well.

There is a new sheriff in town. Deqlan is the oldest in ICU and spends a lot of time overlooking his premature friends in the ICU cubicles. He is quite satisfied with the care they are receiving from the sisters/nurses and seems to take a real interest in keeping a watchful eye on in his close friend in the room directly next to him.

The staff of the Paediatric and Neonatal wards have taken a real liking to Deqlan and continually check in on his progress to make sure things are going as planned (this time around). The superstar “Deqlan” (aka Short Stack), performing live at the Kloof Medi-Clinic until this weekend only.

We continually receive your inspirational e-mails, sms’, phone calls, faxes, post, telegrams, telexes, runners, messages via pigeon, etc., and we thank you all for your continued support through these very difficult and emotional times.

We really do appreciate your love, care and prayer for us and our entire family, but most of all for Deqlan. Please continue praying for our beautiful boy, God is listening. Our faith and belief in God is stronger than ever and we know God is hearing our prayers, as Deqlan is getting better every minute.

Keep your eyes peeled for the forthcoming “Blog”ttractions, but until then, Good Night and Good Luck.

Mark (Papa Bear), Samm (Mama & Tired Bear), Deqlan (Soldier Bear)

quick update , more to follow

just a quick note to let you know Deqlan still stable and looking good this morning - my mom will post a more detailed blog when she arrives - thanks for all your love and prayers we appreciate it more then you know! deqlan still draining alot of bile during the night but seems to be getting better this morning - please pray he continues to get stronger! all our love samm & deqlan

Monday, June 25, 2007

Monday, 25th June 2007 - Another faith challenge

Today's blog is especially dedicated as a tribute and honour to an unbelievably brave and courageous "warrior for Christ", Deqlan Ross and his remarkable and loving parents, Samm and Mark. The ability of this precious family to meet their challenges and accept God's will in total surrender is what makes them extraordinary, and in my role as mother, mother-in-law and nanna, I salute them in great humility and love.

After Deqlan's victorious success regarding his very positive response to his first round of chemotherapy, things "got back to normal" last week Thursday and Friday and we had 2 unbelievably "fun days" together in the playpen and "travelling to magical places via our trainset and animal farm". Our system of infection control was piloted and proved effective. However, during early Friday morning, after having had breakfast, Deqlan had a projectile vomiting spell of dark green bile fluid. Samm and Nanna looked at each other and without using words, our eyes met and locked in the realization of what this could potentially mean. The vomiting spells continued unabated over the weekend, and in increasing quantities that were clearly cause for concern. After numerous calls (from Friday to Sunday) to different members of Deqlan's team of specialists, they unfortunately did not share the same concern as Samm and Mark regarding this persistent vomiting and inability to keep any fluids and solids down. After Deqlan, Samm and Mark had not slept for 2 whole nights, and the real danger of the possibility of dehydration and electrolyte imbalance occuring as a result of this problem, an assertive and persistent call was made by Mark to the paediatric oncologist who then finally agreed to see Deqlan in the paediatric ward at Kloof MediClinic on Sunday afternoon. After consultations by the oncologist, paediatrician and the paediatric surgeon on call (as the usual paediatric surgeon was away on leave), x-rays were done and it was agreed that the problem could be one of constipation as an intestinal obstruction was not detected at this time. A nasogastric tube was inserted and drainage was minimal throughout Sunday night, although Deqlan could still not retain any fluids or solids. Intravenous fluids were given via his port-a-cath and Deqlan was then given an enema, but with poor result. On Monday morning, 25th June, the quantity of bile, gastric and intestinal fluids ejected was so serious that a barium x-ray was ordered. This revealed a dangerous and potentially life-threatening intestinal obstruction and the "stand-in" paediatric surgeon, an academic specializing in neonatal surgery, promptly organized an emergency laparotomy and Deqlan went back into surgery this evening at 18h00rs.

In a surgical procedure lasting 2 hours, the intestinal obstruction was found to be due to the incisional hernia (which we have previously reported was caused during the second laparotomy to remove the haematoma and intestinal obstruction caused by the first procedure when the biopsy, bone marrow aspiration and insertion of the port-a-cath was initially done). Many other potentially problematic abdominal adhesions were found and "freed" during the operation. Deqlan was re-admitted to Neonatal ICU and is in a stable condition at this time. After his chemo, it is imperative that he is nursed in isolation to limit the risk of infection as his immune system is suppressed after chemo. He is being kept rehydrated, sedated and is on morphine for post-operative pain. It is almost incomprehensible that this was Deqlan's third laparotomy in as many weeks (with two of these laparotomies necessitated by complications caused by previous surgical procedures). Despite his discomfort, pain and exhaustion, as Daddy put him down on the operating table tonight, Deqlan was still able to give Daddy and the anaethetist a beautiful smile. Mommy did a sterling job, in her own imitable, devoted and loving way, of reassuring him that Jesus would look after him, of how much she and Daddy and his whole family loved him and that what had to be done was part of his healing process. And so it was that for the third time, that the family sat outside theatre, waiting, and using the time for prayer and coming to grips with the reality of the situation.

We fully trust in the Lord that Deqlan will make a full and prompt recovery from tonight's surgery and that he will be discharged over the weekend (the latest) to spend some time at home before commencing the second round of chemo at the Oncology Unit at LCM next Monday, 2nd July.

I have seen the doubt in Samm and Mark's eyes, but I HAVE SEEN FAR MORE FAITH.
I have seen their fear but I HAVE SEEN FAR MORE COURAGE.
I have seen their sadness, but I HAVE SEEN FAR MORE JOY.
I have seen their fatigue, but I HAVE SEEN FAR MORE STRENGTH
I have seen their despair, but I HAVE SEEN FAR MORE HOPE.
Their brave and unquestioning acceptance of God's will in their lives is to witness the greatest kind of faith in action. It is pure inspiration and is enabled by the acknowledgement that Jesus Himself is the Great Physician.

Please continue to lift Deqlan, Samm and Mark and our whole family up in prayer; your prayers for healing set in motion God's spiritual power. Prayer has great power and in our asking you to join us in faith and prayer, forms a united prayer - a powerful intervention. His word tell us: "come to Me when you are sick and afflicted; receive My healing and be made whole, for healing is one of the manifestations of My love for you" (Isaiah 53;5). We ask that God answers their prayers in His way, in His time and on His terms.

Sacred Heart of Jesus, we place our trust in You. Please renew our strength, encompass us with Your mercy, enfold us in Your love and bathe our spirit in Your light and wisdom.

Wednesday, June 20, 2007

last of catching up to do

what a wonderful day Monday was -we where discharged from Kloof hospital ! a lot of the staff we had made friends with during our stay were sad to see us go but asked us to come and visit and bring Deqlan back in a months time so that they could see his improvement after a few rounds of chemo

we came home and Deqlan was in his element to be to be able to crawl around in his room, laugh at the dog -see the nature ( our garden) - just to be back in his normal environment was wonderful - i t was amazing for me to to sleep in my own bed after two weeks in a bed or chair at the hospital! things started to feel a little normal again

tuesday morning dawned and we got on our way and got to Little Company of Mary hospital for the first round of chemo - Deqlan petrified to see Doctor De Jager and nurses trying to check his porto cath or take his temperature - he had enough during the last 2 weeks and really doesnt trust anybody he doesnt know - Dr De Jager is AMAZING - we really think he is wonderful and he really connects with Deqlan - you can see that he really cares about his patients and is so thorough in his explanations and check ups etc - we definitely have the right man for the job

He explained the chemo Deqlan would get during Monday and Tuesday - vincristine ( a plant extract) Etoposide for 4 hours ( once on Monday and once on Tuesday) and Carboplatin ( toxic to bone marrow) - main side effects are hair loss, bone marrow depletion and nausea - luckily they give something for the nausea

The paediatric oncolocy ward at LCM is wonderful - there are only 3 rooms, so very private - bright and cherry pictures and rooms really cheer us up and to have a room with a view , even if its was the parking lot, also lightened the room up - kloof hospital was four constant walls which eventually drive you to cabin fever! the staff are amazing and so wonderful and caring - again, i feel we are at the right place now - its so comforting to have a church on sight as well as the regular visits from the nuns to see how we are - they are amazing and praying for Deqlan constantly - we really had a vey comfie and pleasant stay

The chemo went through Deqlans port with no problems and little fuss -i can definitely agree having a port is much easier then having to insert a drip each time! fortunately, no side effects - Deqlan is his happy self - besides the 4 teeth currently pushing through at the moment - the poor little guy screams in pain - can you believe ow strong he is to go through all of this at the same time and still smile and laugh!

Deqlan is Dads boy at the moment - whenever he sees Mark he insists on getting into his arms - shame i love watching the two of them together- they love each other so very very much

We where so glad to leave LCM this morning as we knew we were coming home and this time for over a week ! we need to go back for the second round 2 -4 july - so glad we have a bit of normal time at home together - being at home now is a real treat for me

deqlans eye has gotten a lot darker and more swollen after the last few days- a conditom the doc calls racoon eye = he says it shouldnt get any worse as te chemo will stop the cells growing ans should now start shrinking and disapearing- we should see an improvement in about 1 month - it looks very sore - but doesnt seem to worry him at all

Thank you to you all for the amazing amount of love,support and prayers weecieve each day -plse continue to pray for our beautiful deqlan

all our love
mark,samm.deqlan

Sunday, June 17, 2007

Sorry for the wait!

We are so sorry we havent been able to post a blog over the last few days - we have had quite a few problems with our lap top and signal in the hospital!

Its the first time that I have managed to get a moment to give you all the latest news , as Deqlan lies in Dadas arms on Fathers Day, both catching up on some much needed rest.

I only had 1 hours sleep last night - as i am not allowed to sleep in the icu ward with Deqlan - i have to "find a bed" each night we have been in icu - i was asleep for about an hour when the nurse came to wake me up saying Deqlan was crying - when i got back down here, he was sobbing and saying Mama - my heart just melted and we spent the rest of the early hours of this morning playng and eventually Deqlan went to sleep at 6am this morning - I have not had a chance to rest yet so hoping to catch a few hours tonight - but in the chair in his room - dont want to put him under anymore stress of him waking him and not seeing me

WE ARE GOING HOME TOMMOROW - MONDAY , 18 JUNE - I CAN NOT WAIT - I AM SO EXCITED!

We have a break of 1 night and then we have been given the go ahead to start with the first round of Chemo at Little Company of Mary on Tuesday, 19 June - we will be in the hospital for 1 night as this first round requires over 30 hours of treatment etc

I cant wait to go home and watch Deqlan crawl around and laugh at the sight of our dogs - enjoy morning live with Vuto and Leeann and most of all to sleep in our own beds! We are definitely starting to get cabin fever inside these four walls and Deqlan is unable to crawl on the floor - so very frustrated !

Dr De Jager, our oncologist paid us a visit today and gave us a list of the treatments we will be going through over the next 100 day - there are assessment periods during the 100 days to check on the progress of the treatment - WHICH I AM SO POSITIVE IS GOING TO WORK FIRST TIME -THESE CANCER CELLS ARE NOT GOING TO KNOW WHAT HAS HIT THEM

Deqlan has been drinking milk and keeping it down! the dosage increases as the feeds go on we are on 60 mls at the moment and we should be almost back to normal tommorow morning - and hopefully solid food slowly but surely from tommorow - poor Deqlan gulps each and every single drop and wants more ! shame, we will get there....

He is looking great today and has been since Friday afternoon - all the pipes are out , except for 1 drip running to administor the antibiotic - only 1 more dose left, then will be taken out tommorow morning - yipee!

I want to thank each and every single one of you for every sms, phone call, email, but most of all for your PRAYERS - I KNOW OUR LORD IS LISTENING - WE HAVE ALREADY SEEN HIS MIRACLE IN PROGRESS!

Deqlan , Mark and I gave each of you our biggest hugs and kisses - thank you , thank you , thank you - we are Blessed to have the amazing support structure we do in you all

Please keep the prayers going - we appreciate each and every single one and each one is a step closer in the direction of Deqlan being COMPLETELY HEALED! Our Lord is so great
!

Look after yourselves hope you had a lovely Fathers Day - I know Mark did as he was with his little boy and had such a lovely telephone call from Logan ...

All our Love and Gods Blessings to you all
Mark, Samm& Deqlan

Thursday, June 14, 2007

Thursday, the 14th June 2007

A bright new day dawned in the ICU and Samm sent word from the unit at 07h00rs with a cell MMS containing a photograph of Deqlan propped up on 2 pillows playing with Noddy !! The blood transfusion had already contributed to Deqlan's colour and he had rosy cheeks and beautiful rosy lips again. Overnight, his Hb went from 7.3 to 13.2 !!!!

The paediatric surgeon was happy with Deqlan's overall condition, as was the paediatrician. Today he re-examined the swelling in the right groin and stated that it could possibly be an incisional hernia, believe it or not, from the second laparotomy of this last Tuesday !!!! He is not unduly worried (versus how stunned we were to hear of this possible hernia) and is more concerned with getting the nasogastric tube removed asap so Deqlan can start oral fluids in preparation for discharge soon. The drainage is miminal and at last, transparent, a great sign as this means that in the morning, the nasogastric tube can be removed and Deqlan can start taking in oral fluids on Friday. All going well, milk intake on Saturday and then possible discharge on Sunday, please God. What a wonderful gift this would be for daddy Mark to have his precious son come home on Father's Day !! As for the hernia, if it eventually can be correctly diagnosed, we envisage that when the surgery is done to remove the primary tumour on the adrenal gland (after the chemotherapy has "shrunk" the tumour significantly), the hernia repair could be done at the same time.

The greatest blessing of the day was Deqlan opened his beautiful eyes and responded to our voices. Mommy, Meggie and Nanna, took turns singing songs to him and playing with the soft toys he has in his cot in ICU. Nanna felt blessed and very emotional when her precious Deqlan, reached up his hand with the drip and despite the splint to keep the intravenous line secured, his little thumb made its way out of the splint to stroke Nanna's cheek whilst she was singing to him. A very precious moment indeed. Daddy, early in the evening also was privileged enough to have the same little thumb play with Dad's hand. We have all tried out best to make him smile, and although the movement of the lips was there, the smile did not quite materialize. We will be patient.

Generally, Deqlan is looking much better and should soon have more energy, but he remains sedated and is still receiving pain medication to keep him calm and comfortable in ICU. Today was a great, positive day; we know tomorrow will be even better as Deqlan starts to drink fluids again. We thank you Lord for bringing Deqlan to this improved condition and may You as the great and mighty healer, continue to bless him, protect him, comfort him and heal him. We pray also that you give Samm and Mark and the whole family, renewed strength and courage, wisdom and understanding and increased acceptance and faith that Thy will be done. We know that you WILL answer our prayers in YOUR way and in YOUR time.

God bless you all. Please continue praying in earnest for Deqlan's complete and permanent healing.

Posted by Bev Bourne.

Wednesday, June 13, 2007

Wednesday, the 13th of June 2007

After Deqlan had a peaceful night in Neonatal ICU, the day dawned and brought with it new challenges for us all. Bloods were once again pulled and it was found that Deqlan's Hb (haemoglobin -oxygen carrying capacity of the blood) had dropped to 7.3 and it was decided that a blood transfusion was imperative. The blood transfusion is now in progress as this blog is updated.

During a mid-morning nappy change, Samm's very alert eyes (and intuition) spotted a large swelling in the right groin area. Once again, stunned disbelief is the only way to describe the moment. The ICU Sister called the paediatriac surgeon who assessed that the swelling was most likely due to the many sutures he had used in the area after yesterday's surgery. Our fear was that it was another haematoma and so we pray that the surgeon is correct. By early evening, there was some improvement in the size of the swelling, but we will all "relax" only when the swelling has completely disappeared. The surgeon will reassess tomorrow.

It is something quite extraordinary and beautiful to observe our Deqlan sleeping, even if it now has to be amongst all the tubes in and around him. With the high-tech of the ICU environment, the blanket he has covering him is one of Winne-the-Pooh, Tiger and Eyore and together with his specially selected soft toys in his cot, is enough evidence for us to have abundant faith and hope to visualize his coming home to play with these actual characters in the very near future.

Despite the sedation and analgesic medication, Deqlan has begun "fighting his war"and is tugging at any tube he can get his little fingers around. He succeeded in pulling out his nasogastric tube, which then had to be re-inserted to ensure efficient post-operative drainage. Deqlan remains nil per mouth and when Mommy gave him a glycerine-flavoured mouth swab earlier, he started sucking on it as if it was a delicious lolly - and to him - it certainly was.

Samm and Mark are feeling, understandably, "drained", as is the rest of the family after the ordeals of the last two days in particular. They earnestly request that your prayers continue 24/7 for Deqlan's recovery and for strength, courage, understanding, endurance, faith, hope and peace for themselves.

We hope that tomorrow (Thursday) will be a day blessed with only positive developments and outcomes. After the transfusion, Deqlan should be stronger and ready to tackle the road which leads him out of this clinic, so that he can, as planned, commence his chemo next week. Sacred Heart of Jesus, we place our trust in Thee, all for Thee o Lord, oh our Jesus, all for Thee.

God's blessings to you all.

Posted by Bev Bourne

Tuesday, the 12th June 2007

This day was without doubt, one of the toughest and roughest days in this period of our lives (with the exception of course being the day we found out about Deqlan's diagnosis). Pressured by Mark, Samm and Nanna in the background, the surgeon eventually took a decision on the excessive drainage, bloods were pulled and Deqlan was sent for x-rays and thereafter a contrast barium examination which did reveal an intestinal obstriuction. Deqlan went to theatre at 16h00rs where the surgeon found the obstruction was caused by a haematoma (pool of collected blood). It is suspected that damage to Deqlan's intestine was caused by the laparoscopy procedure attempted last Monday. (You will recall that the laparoscopy was first attempted to obtain the biopsy of the tumour, but it was not successful and thus a laparotomy had to be performed). Deqlan thus had a second laparotomy and was admitted to Neonatal Intensive Care. His condition is stable and he is comfortable. Mark, Samm and the whole family survived the day in a state of stunned disbelief at the series of events which had unexpectedly unfolded. We are currently in our 9th day of what was initially supposed to be a maximum 3 night stay. These events are of great concern to all of us since they are causing a delay in Deqlan's urgent need to commence, as soon as possible, the initial chemotherapy programme.

We ask for your continued prayers for our precious Deqlan, Mark and Samm. We do not ask the WHY question of God, we ACCEPT that His will , not ours, be done. Sacred Heart of Jesus, we place our trust in thee. all for thee O Lord, oh my Jesus all for Thee.

Posted by Bev Bourne

Tuesday, June 12, 2007

Monday, the 11th June 2007

Deqlan Ross Higgins reached an important milestone of 9 months of age at 08h17hrs this morning and the day was greeted by Mom,Nanna and Meggie singing to him. Meggie arrived at the ward at 06h15rs and later presented Deqlan with some interesting toys to pique his curiosity. The relationship between Meggie and Deqlan is very special and he loves her rocking him to sleep whilst she sings "Que sera sera". Mommy often jokes that when she struggles at home to get Deqlan to sleep, she is tempted to call Meggie many times as he finds her shoulders a most restful place !!!!!

Deqlan's name is of Irish descent and he is named after the Irish saint, Saint Declan. The meaning of Deqlan's name has great significance - it means "full of prayer" or "prayerful", and is just another reason why he is our very special, precious, and beautiful (ok..... and handsome !!!!) baby boy. Deqlan is truly a magnificent blessing from God and he has already as a baby, taught us and so many others, the true meaning of, and most important reason for , prayer in a most profound way. Sincere thanks to you all for your continued prayers and for all the loving wishes for his special day.

The paediatrician did an early morning round and was generally happy with Deqlan, but is still perplexed as to the reason for the persistent problem of excessive bile and intestinal fluid drainage. The visit by the paediatric surgeon later in the afternoon resulted in his decision to reassess stomach, intestinal and colonic function to try and establish the reason for the problem which is preventing our Deqlan's discharge from this ward. A series of x-rays and blood tests will be done early Tuesday morning to exclude the possibility of an intestinal type of "kinking" post-operatively. We earnestly need your specific prayers that whatever is causing the problem rectifies itself as soon as possible, as there exists a real danger that Deqlan may have to return to theatre for another laparotomy to investigate directly the cause and source of the excessive fluid accumulation/drainage. Our precious boy has really "had enough" over the past 8 days and nights, and our prayers must be that the operation, even as a last resort, never becomes necessary. Our goal is to get Deqlan as strong, as fully recovered and as nutritionally stable as possible before his chemo starts, now scheduled for Monday next week, 18th June at the Little Company of Mary Oncology Centre. We would love him to go home to enjoy his own surroundings and environment for as long as possible before his Monday admission. Sacred Heart of Jesus, we place our trust in Thee that You will ensure that Deqlan is spared of the need for surgery for his current problem. We ask this in the name of our saviour, our Lord, Jesus.

The TPN and drip lines are continuing as Deqlan is still nil per mouth whilst the nasogastric tube drains away the digestive fluids. When his problem is corrected and if all goes well tomorrow, it is expected that he will once again start with clear oral fluids (for 24 hours) and then go onto milk feeds (for 24 hours). He is to retain all fluids consumed before he will be discharged.

Deqlan has been "niggly" all day again, with Mommy's expert opinion being that his teething of his top two front teeth is responsible for his inability to settle. Deqlan went from the arms of Mommy, to Daddy, to Meggie, to Conrad , to Nanna during the day but could not seem to find a comfortable position. New teething medication was ordered by the ward sister but Mommy still prefers her "old" standard remedies which she has been previously using. If only these teeth could break through the gums, there would be at least one less reason for his discomfort. Uncle Conrad and "Apache", the courageous lion toy, which Daddy gave his brave son, had some fun together with and chuckles from Deqlan in the afternoon. The rest of the day was spent playing with his musical and/or plush toys and watching his fun and education Baby Einstein DVD's which he simply loves. When Mommy tried to do some travel agency work on the laptop computer, Deqlan kindly assisted by pressing the keyboard for her - a memorable moment in time in his computer literacy education ! Smiles generally came sure and fast from Deqlan but his discomfort was noticeable despite this - bless him, he is trying so very hard.

Our little "warrior of prayer", our "brave prayerful soldier", Deqlan, has changed and continues daily to change, so many lives in so many inspiring and astounding ways. Our gracious Lord and Saviour, we ask that you continue to protect, strengthen, and bless our precious Deqlan, Samm and Mark, all the family and the amazing groups of friends that are sharing this "journey of challenge" with us in prayer, thought and deed. In particular today, we ask that You decree any further surgical interventions for Deqlan at this moment in time, unnecessary and we implore that his current problem of excessive drainage resolves with immediate effect. We believe and place our trust in You.

Posted by Bev Bourne - AKA Mom and Nanna

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

Saturday, June 9, 2007

Saturday, the 9th of June 2007

Apart from the vomiting during the night again, Deqlan started a brand new day to find both Mommy and Daddy in his room ! Daddy Mark did a 15hour stint and managed,like Mom, to get some rest sleeping with Deqlan on their chests. Deqlan is most settled sleeping in the arms of either Mommy or Daddy on the "parent bed" in Deqlan's ward, and thankfully, the ward sisters here seem to have no objection.

After the paediatrian saw Deqlan, there was some concern as to the persistent vomiting. Abdominal X-Rays were ordered to exclude any obstructions and the results were normal but showed that Deqlan had a lot of abdominal gas. Bloods were also pulled and all the results came back normal. In order to exclude a gastric or intestinal infection causing the problem, a stool specimen was also collected. Deqlan was nil per mouth until lunchtime when we restarted clear oral fluids again. The vomiting is persisting but the quantity has been greatly reduced. Of all the "pipes and tubes" around, on, and in Deqlan during the week, only his intravenous drip line remains, in order to provide Deqlan with fluids, proteins and glucose and for the administration of medicines. A decision has also been taken to ensure he remains pain-free and so his pain medication has been revised to a more regular schedule, rather than on demand.

Samm contacted the paediatric oncologist this morning who reported that the final biopsy results had still not been received. He assured Samm that by Monday morning, the final results will be available. Deqlan needs to be stabilized, and completely tolerating oral fluids (clear foods and his milk) before the chemotherapy sessions (scheduled for Tuesday- 11th June) can start. The 3 doctors (paediatric surgeon, specialist and oncologist) will take a final decision on this on Monday.

Deqlan had a restful afternoon, playing "tickle games" with Mommy and Megs, watching his DVD's and YES !!!! he smiled and reacted to them in his usual adorable way. Mommy, Megs and Nanna acted out a "threesome songshow" for Deqlan who had to tolerate the impromptu performance which included songs such as "Do-Re-Mi", "Happy Talk", "Que Sera Sera", "Belly Button", "Getting to Know YOu"and a short cabaret of Nanna's interpretation of "Tarzan of the Jungle". His eyes told us to never give up our day jobs.

We have decided that we will all continue with "our shifts" over the weekend, so that Samm gets quality sleep whenever she can, and between Mark, Megs, Nanna and even Grandpa Derek, there will be someone with her and baby most of the time.

Unfortunately, Deqlan's vomiting had not ceased and at 20h00rs, the nasogastric tube had to be re-inserted. Unbelievably, about 250mls of bile-stained liquid was removed from his tummy. He appeared far more restful afterwards and we pray to our dear Lord, that He grants our precious Deqlan, a peaceful night's sleep, with only beautiful dreams. In the morning, the likelihood is strong that another drip (CVP line) will have to be inserted to ensure Deqlan's nutritional requirements are met, since he does not seem able to tolerate oral fluids. It is imperative that Deqlan is in the best nutritional condition possible to strengthen his immune system before the chemo can be started. It has been a tough day for our precious boy, and being the true hero nd courageous warrior that he is, delighted us with beautiful smiles and giggles, laughter and baby "babble" this afternoon, despite his discomfort from the accumulated fluid !

The results from the stool test came in at 21h30rs and revealed no signs of infection. This is another peice of good news, as was the X-rays and blood tests coming back as normal.

As Samm's mother and Deqlan's grandmother, I am so humbled by their courage and bravery and I salute them in love. I ask our Precious Saviour, the Lord Jesus to bestow on Mark, Samm and Deqlan, His unending love, peace, mercy and compassion.

We implore you to continue praying for Deqlan, Samm and Mark as prayer is the "medicine of the Lord".

Posted by Bev Bourne

Friday, June 8, 2007

Friday the 08th of June 2007

The day started on a positive note with Deqlan's oxygen support being discontinued. Once again we could adore his beautiful face, minus all the tubes. The paediatrician arrived and was happy enough with Deqlan's condition to suggest to Samm that she could start feeding Deqlan small amounts.

Early this morning, a rash appeared behind Deqlan's ears, face and back and the sisters on duty seemed to think it could have been "baby measles". However by late afternoon, the rash distribution and nature had significantly changed so we have doubts as to their suspicions, especially since the rash is predominantly over areas which have previously been covered with plaster. We suspect a sensitivity to this plaster.

Megan has spent 13 hours on duty helping Samm with work matters and helping Deqlan - how he loves his "Meggie" !. Uncle Conrad spent much of the day with Deqlan and managed to get a few chuckles and smiles from Deqlan, especially when he played "Peek-A-Boo" with a giant giraffe, which was one of the gifts Deqlan received today. On this topic, we are soon going to need another cot to house all his toys. He has a selection from home (for familiarity) but has received many others as gifts to join his collection. He loves his bears, cows, teddies and frogs, the latter having great significance to us - F R O G - Fully Reliant on God.

Unfortunately, Deqlan has been vomiting after any oral fluid given to him. Samm is understandably very concerned. If the vomiting does not stop, a nasogastric tube will have to be re-inserted during the night to drain bile and stomach fluid contents. We trust in our Lord that during the night, there will be no further vomiting and that the tube will not be necessary.

We were delighted to see that the oedema (puffiness from fluid retention) of the right eyelid had completely disappeared by the afternoon. It was a blessing to see Deqlan looking more and behaving more like his "old" self today. He spent some of the afternoon watching his favourite DVD's, which alas, did not result in big smiles or chuckles of laughter as they normally do. We will be patient. His interest in his little racing car was delightful to witness as Deqlan loves putting his index finger over the spinning wheels of the car in order to make the wheels stop spinning. Deqlan has a passion for wheels of any kind !!

Tomorrow, Deqlan's paediatric oncologist will possibly give Mark and Samm the biopsy results. We have heard that this doctor is returning from leave tomorrow. Whatever the results are, we stand firm in the belief, trust and hope that the Gracious Lord Himself will ultimately heal Deqlan fully and permanently. We are hoping that Deqlan is strong enough to be able to go home over the weekend, so that he at least has one or two nights at home before starting chemo on Monday or Tuesday next week. It is our preference that Deqlan has his chemo at the Oncology Unit of Little Company of Mary as the nursing staff there are fully versed and experienced in the oncology therapies. If Deqlan cannot be discharged over the weekend, the likelihood that Deqlan will start chemo here at Kloof clinic instead is possible.

In the words of orphan "Annie", "The sun WILL come out tomorrow, bet your bottom dollar there'll be sun, just thinking about tomorrow clears away the cobwebs and the sorrow; When I'm stuck with a day thats grey and lonely, I just stick out my chin and grin and say - Tommorow, tomorrow, we love you tomorrow, you're only a day away". We will then have been blessed to love our precious Deqlan, Mark and Samm for yet another day.

Mommy Samm has had a "roller coaster day" and is understandably tired and concerned. Motherhood is NOT for the faint-hearted; our Samm is a brave and courageous warrior, just like her son. Mark, Samm and Deqlan WILL be victorious in their "battle" since their faith, hope and trust in the Lord is unquestionable and unwavering.

Mark, Samm and Deqlan thank you all sincerely for your messages, gifts and support, but most of all for your prayers, as it is through prayer that we shall receive our "miracle" when Deqlan is fully and permanently healed. We believe this with all our hearts, souls and spirits. We thank our Lord Jesus for keeping our precious Deqlan in His safe and loving care. We see evidence of "tiny miracles" at work in Deqlan every day. We know that God listens to both spoken and unspoken prayer from the heart. Samm, Mark and Deqlan request that your prayers for them continue daily and ask that God blesses you and yours also.

Posted by Bev Bourne - AKA - Mom and Nanna.

Thursday, June 7, 2007

Thursday the 07th of June 2007

Bootcamp went well, Mom and Dad both got some much needed rest. Nanna and Sister shift went well and Deqlan had a peaceful night!

Puffiness on his fontenal (soft spot of head) a bit better but his eyes are still a bit puffy.
The best news of the day was that his feeding tube came out and he has started to drink sips of water, shame the poor guy is so hungry! If he keeps the water down through the night, we can try some milk tomorrow.

Mom got her first glimpse of Deqlan's porto-cath wound and it's looking good considering. Deqlan enjoyed his bedbath this afternoon and we cant wait to get him into his own bath at home that he loves so much!

Dad got another smile from Deqlan and his strength is definetely coming back as he is trying to stand and push himself up against Mom's legs which is a good sign.

Deqlan's blogspot was officially launched today we have already received such wonderful and positive posts! Please continue to visit this blog daily for any updates.

No results have been released as yet - we are expecting the results either tomorrow or even over the weekend. Please continue to pray that the results are favorable.

Bootcamp continues tonight with Sister until 24hoo and Nanna until 06h00.

Thank you again for all your love, prayers and support. Deqlan is blessed to have you all right behind him everystep of the way.

Posted by Megan

Wednesday, June 6, 2007

Wednesday the 06th of June 2007

Deqlan had a bumpy start this morning. There were questions about his blood count and kidney’s again. After blood tests done it was established all was fine.

After Dad getting a huge lion teddy bear with a plaster on his tummy which indicated he too had a operation and a stand up performance Dad got the first smile since the operation out of Deqlan which is wonderful and a good sign. Deqlan also said "mamma" in his jumbled way.

Deqlan is kept comfortable at all times with Mom and Dad right by his side. Little one is looking much more comfortable and more responsive and observant of the many things going on around him.

Mom and Dad has been “boot camped” tonight. Mom has to sleep in the bed next to Deqlan as she has not slept for two days now and Dad had to go home to sleep. Sister is taking the shift to 12:00am and Nana is taking the morning shift to 6:00am. Hopefully Mom and Dad can sleep to regain their strength.

Thank you for all the good wishes and prayers for Deqlan they are all cherished.

Posted by Conrad
Thanks to Loren for the photo

Tuesday the 05th Of June 2007

Deqlan doing fine under the circumstances. There is some concern as his eyes are a bit puffy therefore a kidney function test was done and all came back good. Mom, Nanna and Sister could pick up Deqlan for the first time after the operation. At first was worried of hurting the wounds but all is okay now.

Deqlan is awake more and as happy as could be considering the circumstances. He is responsive, vocal and fighting all the way. Just wants to go home and watch “Baby Einstein”.

Dad and Mom very tired and concerned. Not much sleep for Mom again as she wont leave Deqlan’s side at all.

Posted by Conrad

Monday the 04th of June 2007

A service was held for Deqlan in the morning at the chapel at The Little Company of Mary in Brooklyn.

After the service all headed to the hospital to get Deqlan ready for his surgery. Dad took little one into surgery around 12:10pm and lasted an estimated 2 hours. They tried to retrieve a biopsy of the tumor in his abdomen with a small incision but they were not successful therefore forced to create a larger incision to obtain a sample for biopsy. It was confirmed that the tumor is cancer and was sent off for more tests to study the characteristics of the tumor to work out a viable treatment plan.

A porter-cath (this gives easy access to the main artery to administer the chemo therapy) was put in and a bone marrow was done for testing purposes.

Deqlan looks like he has been in the wars with five big plasters coving the cuts on him and pipes everywhere. Very scary for all of us.

Deqlan was groggy as you can imagine after the operation but was kept comfortable. There was some concern for his blood counts later in the evening as it was low and the thought of a blood transfusion was present. After the third blood test his blood counts did go up and thankfully no blood transfusion was needed.

Not much sleep for Mom as she is with Deqlan at all times. Dad giving all the support in the world.

Posted by Conrad


Thanks to Loren for the Photo

Information on Neuroblastoma

Neuroblastoma

Definition: Neuroblastoma is a malignant (cancerous) tumor that develops from nerve tissue. It occurs in infants and children . It is rarely found in children older than 10 years. The cells of this cancer usually resemble very primitive developing nerve cells found in an embryo or fetus. (The term neuro indicates "nerves," while blastoma refers to a cancer that affects immature or developing cells).

Causes and risk factors: Neuroblastoma can occur in many areas of the body. It develops from the tissues that form the sympathetic nervous system (the part of the nervous system that controls body functions, such as heart rate and blood pressure, digestion, and levels of certain hormones).

The cause of the tumor is unknown. Neuroblastoma is by far the most common cancer in infants and the third most common type of cancer in children. There are approximately 650 new cases of neuroblastoma each year. This number has held steady for many years.

Boys are somewhat more likely to develop neuroblastomas than girls. For every 6 cases in male children, there are 5 in females.

The average age at the time of diagnosis is about 17 months. Around one-third of cases are diagnosed by the first year. Nearly 90% of cases are diagnosed by age 5. And about 2% of cases are found in people over the age of 10, including in some adults. In rare cases, neuroblastoma is detected by ultrasound even before birth.

Treatment varies depending on the location of the tumor, the extent of tumor spread and the age of the patient. In certain cases, surgery alone is enough, but often other therapies are needed. Anticancer medications (chemotherapy) may be recommended if the tumor is widespread. Radiation Therapy may also be used.

Complications
Spread of the tumorDamage and loss of function of involved organ(s): Kidney Failure Liver failure; Loss of blood cells produced by the bone marrow; Decreased resistance to infection; Other organ system failures

Expectations (prognosis)
The expected outcome varies. In very young children with neuroblastoma, the tumor may go away on its own, without any treatment, or the tissues of the tumor may mature and develop into a benign gangalioneuroma (a tumor of the peripheral nervous system) that can be surgically removed. In other cases, the tumor spreads rapidly.Response to treatment is variable. Treatment is often successful.

Information taken from:
http://www.nlm.nih.gov/medlineplus/ency/article/001408.htm; http://www.cancer.org/docroot/cri/content/cri_2_4_1x_what_are_the_key_statist...
There is a little information on the cancer.

Thanks to Bowman Family for letting us use the above information on our blog

31 May 2007

Hi all

After the MIBG scans, it has been confirmed that Deqlan has a primary Neuroblastoma tumor in his abdomen and a prominant 2nd tumor in his left eye socket and a few other traces in some of his bones.

They are still awaiting the urine tests which they should receive tomorrow.

They will probably do the sergical procedures on Monday, to remove a piece of the primary tumor for the biopsy, to study the characteristics of the cells and will probably also insert a porter -cath at the same time.

Once they have done the biopsy they will know the type of the cells and will then formulate chemo therapy treatment plan, which should begin around 11 June and will last between 3 - 6 months, which will hopefully clear it all.

Thank you all for your prayers. Please always keep Deqlan in your prayers, we have faith and belief in God the Deqlan will be healed.

25 May 2007

After being worried about a bruise on Deqlans eye for quite some time,and after taking him to a paediatrician and opthalmic surgeon,we decided to take things into our own hands and arrange for a scan to check if there was anything stuck in Deqlans left eye - i was devastated when they told me that they had discovered something and would need to do another scan to confirm their suspisions .... i never expected to hear the words " your son has a big tumour attached to his adrenal gland, we think he has Neuroblastoma" i was in complete shock & disbelief - how could my beautiful 8 month old baby boy - who was so healthy and happy and full of life be facing this possible diagnosis - we immediately arranged to see a paediatric oncologist - what a wonderful man - Deqlan immediately connected with him - he seems to think that the doctors had made a correct diagnosis , but insisted on doing a lot more testing

My world and everything in it came crashing down - i couldnt believe what i was hearing - this was the last thing i expected to hear after just going to do a check up on his eye! i felt helpless lost and destroyed - my life will never ever be the same again

How am I going to make it better for my son - how am i going to heal him - the answer is IM not HE is - The Lord has a plan for my son and I have to believe it - I have to believe Deqlan is going to be healed and he is going to continue to be the bright clever beautiful healthy baby boy he is