Just a quick note to night to let you know Deqlan doing great - he has another two teeth on the way so they bothering him at times, but not half as bad as his molars where - shame hope they cut and ease off soon
Enjoying our days at home in the rain - wanted to take Deqlan walking but to wet to go outside!
Deqlan has been such a star - he even helps me do the washing - taking washing to the machine, taking it out and hanging it up - its the cutest site hope to put pics up soon - Nanna and Megs couldnt believe how clever and cute Deqlan was doing this - shame , he is so clever!
Please say extra special prayers for our friend Kate, she has a lot of scans and tests this week that will hopefully leave her as NO EVIDENCE OF DISEASE and that the doctors can have a game plan for her surgery in the next few days - we are with you all and constantly praying and chanting NED and shrink shrink shrink
4 more sleeps till our 9th round and no bags to be packed, hooray!
Sleep tight all and please continue your prayers for our gorgeous and beautiful soldier Deqlan
Lots of love
Mark , Samm & Deqlan
Monday, October 1, 2007
Wednesday, September 26, 2007
Wednesday, the 26th of September 2007
Hi All
We had a good Tuesday - We didnt sleep all that great Tuesday night but Deqlan caught up on some sleep during the day. We had a great Wednesday to and slept better last night , although Deqlan only fell asleep after 10 last night!
We have now finished the cisplatin and we are now having 24 hours of rehydration and then should be done by 1800 or so tonight - 8 down - 3 to go ! Cant believe this is our last hospital stay over - Deqlan has come through so much - i cant even begin to explain to you the panic attack i had the day Deqlan has to have his first drip put up and they couldnt find a vein so did it in his scalp - i thought that that was the worst thing ever - now when I look back at all the things Deqlan has gone through , the drip was a walk in the park.
You can see the cabin fever is now getting to our soldier he desperately wants to get outside the room and be on the floor and walk around, shame by boy only a few more hours!
I am so proud of you my beautiful boy , you are the bravest, courageous person i will ever know and you go through all of this and still manage to smile and laugh and bring such joy to our lives. We shall continue on this road with you and Dada and I will be by your side every step of the way . Our Lord is continuing his miracle and healing on you and he loves you so so so much. My heart overflows with the love and awe i have for you - you shall ALWAYS BE MY HERO AND INSPIRATION - I LOVE YOU SO VERY VERY VERY MUCH, YOU ARE MY EVERYTHING! You have tought me so much - dont sweat the small stuff - the greatest gift in life is spending precious time with each other - there is nothing more important then family - you have brought our entire family closer to The Lord. You make any cloudy day bright and you make me want to be a better Mama and better person. I love you my sweet heart so so so so much. God Bless you and continue to keep you from all harm
My Love, i think you are the most fantastic Dada and im know Deqlan does to. The smile on his face when you walk into the room is priceless - he laugh that comes from his belly when you tickle him is the best sound in the world. Thank you for taking such good care of us and for loving us the way you do. We shall continue to be there for each other and i look forward to so many many more happy memories together with us all. I know how busy and stressed you are at work and you still continue to be the great Dad and husband you are - thank you my love, we love you will all our hearts and souls . God continue to give you the strength and courage and renewed Faith each day , on this journey and always.
Thank you my amazing Mom, for being with us through this journey every step of the way, as you promised on the 25th of May - As i have always said you are Mark and my right hand and we love you and treasure you dearly. Deqlan loves you so very much and treasures every second he is in your arms as you sing to him or play with him or soothe him - thank you Mom for your absolute dedication and love for us - I couldnt continue to work without you helping me with Deqlan - thank you my Darling Mom- you are one of a kind and i am honored to call you Mom and Nanna! There is not one single day that has gone past without you being at the ward with us, looking after him at your house or even coming over weekends to give his much needed neupogen injections, even taking Deqlan while i was sick and needed to recover and protect Deqlan from getting sick - your dedication for us blows me away - thank you for sacrificing so much and for always putting Deqlan and Mark and I first. We love you beyond description.
Dee, without your help and love and support - none of this would be possible . No mountain is to big enough for you to move - when it comes to Deqlan you will move the Grand Canyon and this you have done and more - for also sacrificing and working so hard for us, for always putting us first - for not probem being to big to solve - to fixing all of Deqlans toys that he loves to take apart on a daily basis - thank you - thank you from the bottom of our hearts for looking after us and for spoiling us rotten. We love you so very very very much and are Blessed to have you in our lives. Deqlan loves you so much Grandpa and you are guaranteed to brighten up his day and bring a smile to his face when he sees you!
Megs and Conrad - for always popping in to check in on us whilst we have been at the ward for bringing us smiles and laughs and lunch! For all the phone calls of support and encouragement and above all prayers - Megs for arranging so many fundraising drives to help CHOC and others fighting this disease - you have a huge heart and always looking to see how you can help others - We love you guys with all our hearts and appreciate all your continued help and support .
All of our faithful families and friends - words are not enough to express our heartfelt thanks for your never ending prayers, support, phone calls, text messages, emails , posts - thank you from the bottom of our hearts - we love you all and cant wait to celebrate Deqlans victory over this disease some day soon! I cant wait to thank you each personally!
Koketso left the ward yesterday and looks great - he has lymphoma and it really took over the one side of his face - if you look at him now he looks like a normal beautiful little 4 year old - we think he is also coming to the end of his treatment plan.
Ruan is also here, he has ALL ( form of leukimia) and has anoth 18 months left of treatment - each month his Mommy , Yolandie , brings Ruan from Vanderbijl for at least 1 week at a time - and she is a single mom that cant work because of Ruan being sick. She is also very Blessed to have amazing parents that help her - treasure your parents , they are Blessings!
Ilse has just arrived and has told us this is her second last round so she is also coming to the end of her treatment- great news
Dr De Jager is happy with Deqlan over all and will see us back on 5 Oct at 0930 for our quick session of vincristine - its going to be wonderful to only come for a short while and not pack a huge bag, make that 3 huge bags to stay over - we wont have to try dance and sing and jump to prevent Deqlan from pulling his port needle out! How exciting - Thank you Lord for bringing us so far in this journey and for protecting and healing Deqlan every steop of the day. Thank you for giving us the shoes to walk this journey - without you I dont know where we would be.
Please pray for our special friend Kate in the US - she has completed her treatment and will be having scans and tests done the whole of next week to check on her progress and decide on the next step - we know you going to get excellent results Karen!
I shall also be putting up some photos from Nanas birthday as promised - she had a fantastic Birthday! We surprised her with a braai on Friday night and again on Saturday morning with a brunch! Nana said she had a lovely Birthday weekend and we ended off the celebrations on Saturday evening by attending a lovely mass together. Happy Birthday Mom and many more! We Love you! Enjoy your weekend away - you deserve the break!
Two more very important issues of the day
- those of you who would like to check in with the Dads on the loneliest road campaign you can check in on them and watch their latest heart wrenching video from the following link
- more funding needs to become available so that more research can happen to find a cure for neuroblastoma - we need to ask people that have influence that have the power to get something done about the absolute lack of funding and research on all paediatric cancers. As a start, please take a moment and write to Oprah requesting a show on Neuroblastoma, the signs of childhood cancer and appeals for more funding and education. if 1 email is sent it might be overlooked but if hundreds and thousands are sent the request can not be ignored.
the link
Well, let me sign off for now i have given you a lot to read today. God Bless you all - those in Pretoria stay warm - cant believe its so cold today!
Lots of love
Mark, Samm & Deqlan
EVERYTHING IS POSSIBLE TO THOSE WHO BELIEVE
BY JESUS STRIPES, DEQLAN IS HEALED!
Tuesday, September 25, 2007
Round 8 has begun
Hi All
Thanks again to you all for your extra prayers and support today they worked!Deqlans counts where good enough for us to go ahead with round 8. They are still on the low side, but still great to go ahead!
We have had vincristine, 3 hours pre hydration, currently on 24 hours cisplatin and then 24 hours post hydration.All going great except Deqlan trying to pull the needle out again - its defintiely because of the plaster that he is so allergic to - we even tried another plaster that the adults use that have allergies and he is still red and itchy - shame - only 2 more days my brave boy!
Deqlan was so brave while the needle was being inserted - he didnt even cry this time- what an amazing soldier he is!
The game plan is to come back on 5 October, 15 Oct an 25 Oct to have vincristine which only takes a few minutes to run in. Then we will have a mibg scan and ct scan round 6 and 7 Nov - then depending on those results we shall hear the plan from there on....please continue to pray for Deqlans total and permanent healing and for him to continue doing so well. Please also pray for all our friends fighting NB and all other cancers .
Sleep tight , hope to give lots more info tommorow as well as details of Nannas great Birthday weekend, but its time to go to bed and try and get some rest for tommorow!
Sacred Heart of Jesus we place Our trust in Thee all for Thee Oh Lord Oh My Jesus All for Thee
Lots of love
Mark, Samm & Deqlan
Thanks again to you all for your extra prayers and support today they worked!Deqlans counts where good enough for us to go ahead with round 8. They are still on the low side, but still great to go ahead!
We have had vincristine, 3 hours pre hydration, currently on 24 hours cisplatin and then 24 hours post hydration.All going great except Deqlan trying to pull the needle out again - its defintiely because of the plaster that he is so allergic to - we even tried another plaster that the adults use that have allergies and he is still red and itchy - shame - only 2 more days my brave boy!
Deqlan was so brave while the needle was being inserted - he didnt even cry this time- what an amazing soldier he is!
The game plan is to come back on 5 October, 15 Oct an 25 Oct to have vincristine which only takes a few minutes to run in. Then we will have a mibg scan and ct scan round 6 and 7 Nov - then depending on those results we shall hear the plan from there on....please continue to pray for Deqlans total and permanent healing and for him to continue doing so well. Please also pray for all our friends fighting NB and all other cancers .
Sleep tight , hope to give lots more info tommorow as well as details of Nannas great Birthday weekend, but its time to go to bed and try and get some rest for tommorow!
Sacred Heart of Jesus we place Our trust in Thee all for Thee Oh Lord Oh My Jesus All for Thee
Lots of love
Mark, Samm & Deqlan
8th ROUND OF CHEMO COMMENCES TODAY
We are about to leave for admission to LCM Paediatric Oncology Unit, (with our precious Deqlan very appropriately dressed in camouflage attire for the "war" we will continue to fight this round). We ask that you lift our Deqlan, Samm and Mark up in prayer and continue in blessing them with your dedicated prayers and loving wishes. You will never know how much they mean to the whole family and how supportive and energizing they are, especially when "weariness" sets in. Samm will update the blog later with more news, but judging from the beautiful rosy cheeks, pink heels, and what remains of what is just a very slight cold, Deqlan's bloods should be in order for the 8th round to commence. This will be the last hospital "stay" of 2 nights and 3 days (since the remaining 3 chemo sessions will require only "day visits") so there is great reason to give our humble praise and most loving and grateful thanks to our Lord, the Great Physician, for His being with us every step of the way in our challenge, for His promises never to "forsake us" and His vow to reveal the plans He has for us, plans to prosper us and not to harm us, and plans to give us hope and a future" (Jeremiah 19:23).
Posted by Nanna
Posted by Nanna
Thursday, September 20, 2007
Deqlan stood!
Had to quickly let you know that Deqlan stood all by himself for the first time tonight - was so wonderful to see - when I least expected it - i was chatting to Dee and turned to see what our monkey was doing and what do you know he was standing all by himself! Im so proud of him ! He is such a big boy now cant believe how quickly he has grown
Sleep tight
Love a very proud Mama Samm
Sleep tight
Love a very proud Mama Samm
Thursday, the 20th of September 2007
Hi All
Thanks so much for your stunning messages for us to get well!
I think im on the mend - i pray i am - i still sound terrible but feeling a lot better today.
Deqlan slept over at Nana on Tuesday again as i still was not well and contagious - Mark and I came to have supper at Nanna & Grandpa so that we could be with Deqlan until he fell asleep
He came home last night, was wonderful to have the 'noise' back in the house ! I still wear a mask around him as i am still coughing at times so just to be sure, ill wear it for another day or two.
Deqlan seems to be fine, he sounds a little cloged up and has a runny nose at times, a slight cough - but nothing like it used to be , its much better so i think he is also on the mend please God. His bottom molars are completely out now so i dont think they are going to give any more hassle - the top ones still have a way to go - i can see the 'shell' is out but the middle bits still in the gum -shame they huge and must be so painful for my little soldier
It seems like a bot more of Deqlans hair has fallen out - or more thinning out but his eye lashes are still growing a little each day
Please continue to pray that Deqlans flu passes quickly and that i am completely 'fluless' so that we can go ahead with our last hospital round on tuesday and not re infect each other
Just heard from Megs, Conrad and her will be coming home 1 day earlier - Megs hasnt felt well at all the last two days she seems to have eaten something and has been very sick since - so we expect them back round 1900 tonight, shame hope you feel better soon my Meggie.
Its Nannas Birthday on Saturday 22 Sep so we look very forward to celebrating with her and hope to post some pics next week.
Mark is off to Sun City to pLay golf on Sunday and Monday so we will be catching up on some much needed sleep and visiting with Meggie and Nanna and of course, packing for our last hospital stay for the 8th round of chemo, please Dear Lord. After this we only have 3 day visits left for vincristine, this takes round 10 or 15 minutes to flow in and if i work the dates out correctly we shoUld be done by 28 October - we then need to do another MIBG scan to check on cancer cell activity , we pray Dear Lord that nothing lights up on this scan, and then a ct scan to check on the size, position etc of the tumor so we can discuss the surgery with the surgeon in detail.
Hope you are all well , please stay in touch and let me know how you are?
Thank you for all your continued prayers and support our loyal army !
Please continue to pray for all our friends that are battling NB and other paediatric cancers - please pray for more funding to become available for research and for a cure for this disease.
Everything is possible to those who BELIEVE
MARK 9; 23
LOTS OF LOVE
MARK, SAMM & DEQLAN
Thanks so much for your stunning messages for us to get well!
I think im on the mend - i pray i am - i still sound terrible but feeling a lot better today.
Deqlan slept over at Nana on Tuesday again as i still was not well and contagious - Mark and I came to have supper at Nanna & Grandpa so that we could be with Deqlan until he fell asleep
He came home last night, was wonderful to have the 'noise' back in the house ! I still wear a mask around him as i am still coughing at times so just to be sure, ill wear it for another day or two.
Deqlan seems to be fine, he sounds a little cloged up and has a runny nose at times, a slight cough - but nothing like it used to be , its much better so i think he is also on the mend please God. His bottom molars are completely out now so i dont think they are going to give any more hassle - the top ones still have a way to go - i can see the 'shell' is out but the middle bits still in the gum -shame they huge and must be so painful for my little soldier
It seems like a bot more of Deqlans hair has fallen out - or more thinning out but his eye lashes are still growing a little each day
Please continue to pray that Deqlans flu passes quickly and that i am completely 'fluless' so that we can go ahead with our last hospital round on tuesday and not re infect each other
Just heard from Megs, Conrad and her will be coming home 1 day earlier - Megs hasnt felt well at all the last two days she seems to have eaten something and has been very sick since - so we expect them back round 1900 tonight, shame hope you feel better soon my Meggie.
Its Nannas Birthday on Saturday 22 Sep so we look very forward to celebrating with her and hope to post some pics next week.
Mark is off to Sun City to pLay golf on Sunday and Monday so we will be catching up on some much needed sleep and visiting with Meggie and Nanna and of course, packing for our last hospital stay for the 8th round of chemo, please Dear Lord. After this we only have 3 day visits left for vincristine, this takes round 10 or 15 minutes to flow in and if i work the dates out correctly we shoUld be done by 28 October - we then need to do another MIBG scan to check on cancer cell activity , we pray Dear Lord that nothing lights up on this scan, and then a ct scan to check on the size, position etc of the tumor so we can discuss the surgery with the surgeon in detail.
Hope you are all well , please stay in touch and let me know how you are?
Thank you for all your continued prayers and support our loyal army !
Please continue to pray for all our friends that are battling NB and other paediatric cancers - please pray for more funding to become available for research and for a cure for this disease.
Everything is possible to those who BELIEVE
MARK 9; 23
LOTS OF LOVE
MARK, SAMM & DEQLAN
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