Its wonderful to be home! We arrived at home Saturday round lunch time, and it was all smiles as Deqlan woke up to hear and see his beloved doggies Shelby and Stuffy - he immidiately wanted to jump out my arms to get to them to love and play with them!
He also loved the sight of his playroom as i opened the door to put him down to crawl! being in hospital limits crawling and pulling himself up on things as we have to be so careful with the drip in the porto cath - so when he gets home we try and let him spend as much time on the floor as he wants
It was wonderful to go to church last night and report to everyone on the great results of the scans showing significent decrease in primary tumor and the mass in the eye gone!! Everyone is elated and shall continue to pray for our little soldier!
We spent most of the day resting and cleaning and de germing everything ( a weekly process to ensure we take most of the germs and bugs we may have picked up from the hospital away)
Seems like i have a little bit of a blocked nose again and Deqlan slight cough so hopefully will pass as the weather gets warmer
Mark went to see Logan today with Granny and we hear she is getting so big and doing well at school - we really miss her, i cant wait to see her again - Im sure she feels the same about seeing Deqlan, they just love each other so much and connected from the first day they met!
Looking forward to a week in our normal routine again, and with no neupogen injections this time ! Yay! But we will definitely need these after our next round of Carboplatin as this really hits the bone marrow and we got to guard Deqlans immune system even more then we have been
Our friend Koketso was in hospital with us, but not for his chemo, he has no neutrophils, no immune system and picked up a bug in his blood, so he is battling to get well at the moment - please say a special prayer for him to that he gets better asap!
Please also pray for our friends Keira and Charli as they have follow up scans on 1 August - pray for fantstic results for them to
Have a lovely week thanks again for all the prayers , we so appreciate them
All our Love
Mark, Samm & Deqlan
Sunday, July 29, 2007
Friday, July 27, 2007
the restults are in......
...the results are in ...COMPARED WITH THE PREVIOUS STUDY PERFORMED ON 25/05/2007, THE TUMOR HAS SIGNIFICANTLY DECREASED IN SIZE!!!!!!!!!!!!! PRAISE OUR HEAVENLY FAITHER ALL THE GLORY TO HIM - THANK YOU OUR LORD AND SAVIOR
I AM ELATED, I AM ON TOP OF THE WORLD, I AM SO GRATEFUL - OUR LORD CONTINUES TO HEAL DEQLAN - I FEEL LIKE SINGING AND SHOUTING AT THE TOP OF MY VOICE - REJOICE IN THE LORD ALWAYS AND AGAIN I SAY REJOICE
I AM SO SO SO SO PROUD OF MY STRONG SOLDIER - YOU ARE AMAZING MY BOY, YOU ARE MY HERO, MY INSPIRATION MY EVERYTHING
Dr De Jager has just given us this FATASTIC NEWS! The scans definitely show a decrease in the main tumor on the adrenal gland ! There is no soft tissue mass lesions in the left orbit!!!! This means that there is no more cancer present in the bone of the eye socket !!!! Praise Our Lord!!!! I can not explain my elation to you all ! Deqlans eye lid still appears swolen and the eye is not completely back into its normal position but this will improve as the bone remoulds and reforms as it regains its original structure. There is no more mention of lesions in the sinus ( which there were on the last report) No other lesions or mases anywhere else in the head or abdomen!!!!! Unfortunately this scan was not able to give us any more clues on the cancer infiltration that was orginally found in the bones, we will have to wait for end of the chemo rounds for another MIBG scan to confirm. But Dr De Jager says that we can only deduce that there is a grat improvement there to , due to the eye mass disapearing and the main tumor decreasing!!!!!!
The main tumor is around blood vessels though so now we ask for additional prayers that the chemo continues to shrink the tumor so much that it disapears from the blood vessels . Their is also a possibility that the remainder of the tumor could be dead by the time we have surgery and therefore we would just need to keep a very close eye on it. If they could not remove the entire tumor during surgery we would then look at the option of radiation after the surgery - this will only be confirmed / thought about after the sugery
So plan is continue with the further 6 rounds of chemo ( only 3 more hospital stays, the last 3 are day visits!!!!) When Deqlan hits 1 year or 12kg ( we far from that at the moment) the dose will increase by +-25% - we expect the surgery round the end of October - So please Dear Lord - Deqlan can be in top form for his delayed 1st Birthday party, Christmas and the arrival of his cousin in Feb!!! Hooray!
Thank you all for your continued support, love and prayers - we have the best army be could ever hope for with us with Our Lord leading the way! AMEN!!!!
Deqlan continues to be happy and full of smiles and even more active each day - he just wants to go - run and walk and jump and he even tried to swing from the oxygen pipe above his bed yesterday - he makes me laugh! The best medicine in the world for my soul!
Hope to post some new pictures soon!
Please continue to pray for our gorgeous boy and for all his friends that need your prayers just as much!
God Bless and all my love and thanks in the world
SAMM
I AM ELATED, I AM ON TOP OF THE WORLD, I AM SO GRATEFUL - OUR LORD CONTINUES TO HEAL DEQLAN - I FEEL LIKE SINGING AND SHOUTING AT THE TOP OF MY VOICE - REJOICE IN THE LORD ALWAYS AND AGAIN I SAY REJOICE
I AM SO SO SO SO PROUD OF MY STRONG SOLDIER - YOU ARE AMAZING MY BOY, YOU ARE MY HERO, MY INSPIRATION MY EVERYTHING
Dr De Jager has just given us this FATASTIC NEWS! The scans definitely show a decrease in the main tumor on the adrenal gland ! There is no soft tissue mass lesions in the left orbit!!!! This means that there is no more cancer present in the bone of the eye socket !!!! Praise Our Lord!!!! I can not explain my elation to you all ! Deqlans eye lid still appears swolen and the eye is not completely back into its normal position but this will improve as the bone remoulds and reforms as it regains its original structure. There is no more mention of lesions in the sinus ( which there were on the last report) No other lesions or mases anywhere else in the head or abdomen!!!!! Unfortunately this scan was not able to give us any more clues on the cancer infiltration that was orginally found in the bones, we will have to wait for end of the chemo rounds for another MIBG scan to confirm. But Dr De Jager says that we can only deduce that there is a grat improvement there to , due to the eye mass disapearing and the main tumor decreasing!!!!!!
The main tumor is around blood vessels though so now we ask for additional prayers that the chemo continues to shrink the tumor so much that it disapears from the blood vessels . Their is also a possibility that the remainder of the tumor could be dead by the time we have surgery and therefore we would just need to keep a very close eye on it. If they could not remove the entire tumor during surgery we would then look at the option of radiation after the surgery - this will only be confirmed / thought about after the sugery
So plan is continue with the further 6 rounds of chemo ( only 3 more hospital stays, the last 3 are day visits!!!!) When Deqlan hits 1 year or 12kg ( we far from that at the moment) the dose will increase by +-25% - we expect the surgery round the end of October - So please Dear Lord - Deqlan can be in top form for his delayed 1st Birthday party, Christmas and the arrival of his cousin in Feb!!! Hooray!
Thank you all for your continued support, love and prayers - we have the best army be could ever hope for with us with Our Lord leading the way! AMEN!!!!
Deqlan continues to be happy and full of smiles and even more active each day - he just wants to go - run and walk and jump and he even tried to swing from the oxygen pipe above his bed yesterday - he makes me laugh! The best medicine in the world for my soul!
Hope to post some new pictures soon!
Please continue to pray for our gorgeous boy and for all his friends that need your prayers just as much!
God Bless and all my love and thanks in the world
SAMM
Thursday, July 26, 2007
Round 4
We arrived here this morning at 0830 and had a bit of a wait as DR was a very busy man this morning as he always is- Deqlan was so good he didnt even moan about not eating for 6 hours ( we had to keep him nil per mouth for the scan) He was not very happy about putting the porto cath needle in or Doctor doing his usual check ups on Deqlan and cried the whole way through, but luckily Dada was here this morning to try and cheer his boy up
We got the good news that Deqlans blood count was fine to go ahead with the 4th round - the counts are low, but still within the normal limits - his blood level is 9.9 so no need for blood transfusion this round either - yipee!
We waited a llooonnnggg time for them to tell us to go to xrays and Deqlan started to moan as he was now starving ! When the Sister Evans said, of course he can eat/drink something! So we where a little annoyed that we starved poor Deqlan for nothing!
Anyway, we got to the ct scan and he had to drink some awful liqorice smelling iodine to highlight the organs for the scan - needless to say he didnt even finish half - they had to sedate him a little, so that he would lie still for the scans
I had absolute visions of horror whilst standing waiting for the scan to start - it took me back to 25 May when Mom and I and Deqlan went through the MRI scan - but luckily this one wasnt even 5 minutes and no loud noises that could be engraved in my brain like the MRI did
Deqlan sleep for another 2 hours and was very happy to have a normal bottle of milk when he woke up- he had a great afternoon with loads of energy and just wants to climb on everything , walk, run, you name it !
We waited very very very patiently the whole afternoon for the results, and unfortunately nothing had arrived by the time Dr De Jager had to leave! We had to remind ourselves to be patient,its In THE LORDS TIME - NOT OURS!
We know the results are in and we eagerly await to see Dr De Jager tommorow morning - promise to update you all as soon as we have spoken to him
I cant thank you all enough for your continued calls, sms, emails, posts and above all YOUR PRAYERS - THEY ARE WORKING - OUR LORD IS HEALING OUR DEQLAN - BY JESUS STRIPES DEQLAN IS HEALED ! PRAISE OUR HEAVENLY FATHER!
Hope you all sleep very well and cant wait to share the great news with you all tommorow!
Lots of love, Gods richest Blessings on you all
Samm a.k.a Mama!
We got the good news that Deqlans blood count was fine to go ahead with the 4th round - the counts are low, but still within the normal limits - his blood level is 9.9 so no need for blood transfusion this round either - yipee!
We waited a llooonnnggg time for them to tell us to go to xrays and Deqlan started to moan as he was now starving ! When the Sister Evans said, of course he can eat/drink something! So we where a little annoyed that we starved poor Deqlan for nothing!
Anyway, we got to the ct scan and he had to drink some awful liqorice smelling iodine to highlight the organs for the scan - needless to say he didnt even finish half - they had to sedate him a little, so that he would lie still for the scans
I had absolute visions of horror whilst standing waiting for the scan to start - it took me back to 25 May when Mom and I and Deqlan went through the MRI scan - but luckily this one wasnt even 5 minutes and no loud noises that could be engraved in my brain like the MRI did
Deqlan sleep for another 2 hours and was very happy to have a normal bottle of milk when he woke up- he had a great afternoon with loads of energy and just wants to climb on everything , walk, run, you name it !
We waited very very very patiently the whole afternoon for the results, and unfortunately nothing had arrived by the time Dr De Jager had to leave! We had to remind ourselves to be patient,its In THE LORDS TIME - NOT OURS!
We know the results are in and we eagerly await to see Dr De Jager tommorow morning - promise to update you all as soon as we have spoken to him
I cant thank you all enough for your continued calls, sms, emails, posts and above all YOUR PRAYERS - THEY ARE WORKING - OUR LORD IS HEALING OUR DEQLAN - BY JESUS STRIPES DEQLAN IS HEALED ! PRAISE OUR HEAVENLY FATHER!
Hope you all sleep very well and cant wait to share the great news with you all tommorow!
Lots of love, Gods richest Blessings on you all
Samm a.k.a Mama!
Wednesday, July 25, 2007
Wednesday, the 25th of July 2007
Hello All
Today marks exactly 2 months ago that we heard that Deqlan had stage 4S Neuroblastoma - we actually sat down and took count of all Deqlan has been through in the last 2 months
- visit to peadiatrician who diagnosed conjunctivitis!
- visit to eye specialist who suggested we wait 1 month before re looking your eye - thank Our Lord we did not wait that month
- mr scan - had to sedate him twice in order to do a second round of scans
- mibg scan where they injected radioactive material into his little body
- surgery to insert porto cath, laporoscopy that didnt work, laporotomy to get biopsy of tumor on adrenal gland, bone marrow aspiration
- surgery to fix a blockage caused by laporoscopy!!
- blood transfusion
- surgery to fix hernea created by trying to fix laporoscopy!!!!
- 3 rounds of chemo
- countless drawing of blood, drips inserted, urine and stool tests
- had istotech ( liquid food through a drip/porto cath) as he couldnt eat and lost a lot of weight
...and today...he rolled off the bed and has two little carpet burns and his little forehead to prove it!!!!!!!!
I was devastated- i was trying to erect the camping cot to prevent him for getting into danger and murphies while i was trying to prevent something happening this happened ! Thank Our Lord he is fine -I dont know what I was thinking! Silly and Tired Mom.... A lot of people have assured me this has happened to their kids before but I still feel awful about it!
I am AMAZED at all my little soldier has gone through, and he is still laughing and smiling and continues to be the light of my life - i learn something every day from him - his fighting spirit blows me away - he is already my hero at 10 months old, and will always be, God definitely chose Deqlan for a reason -he is the bravest, strongest, most courageous person i know - I love you with all my heart my Darling Boy - I knew I loved you before I met you - I knew that you where something extraordinary the day you where placed into my arms, 11 Sep 2006.You have already gone through more then our whole family put together, and more - Never ever ever forget how much I love and treasure you - I promise to take the best possible care of you ( never to roll off the bed again!!! ha ha ha) I promise to continue to teach you about Our Lord and Father God and I promise you we are going to get you better because our Faith is so strong and I believe with all my heart By Jesus Stripes YOU WILL BE HEALED!!!
i CANT WAIT TO SEE THE SCAN TOMMOROW WITH A GREAT RESULT!
Please say an extra special prayer for us tonight that Deqlans blood counts are good enough for us to go ahead with the 4th round of chemo, that he sails through as he has done the previous 3 rounds and that the scan shows fantastic progress.Please pray that Dr Dejager makes the correct decisions on where to from here and the correct doses of chemo to give to continue on our road to total and permanent health.
Sleep tight, lets stand together army , Deqlan can fight any battle with the Lord and with you all next to him
God Bless, All our love, till tommorow
Samm
Today marks exactly 2 months ago that we heard that Deqlan had stage 4S Neuroblastoma - we actually sat down and took count of all Deqlan has been through in the last 2 months
- visit to peadiatrician who diagnosed conjunctivitis!
- visit to eye specialist who suggested we wait 1 month before re looking your eye - thank Our Lord we did not wait that month
- mr scan - had to sedate him twice in order to do a second round of scans
- mibg scan where they injected radioactive material into his little body
- surgery to insert porto cath, laporoscopy that didnt work, laporotomy to get biopsy of tumor on adrenal gland, bone marrow aspiration
- surgery to fix a blockage caused by laporoscopy!!
- blood transfusion
- surgery to fix hernea created by trying to fix laporoscopy!!!!
- 3 rounds of chemo
- countless drawing of blood, drips inserted, urine and stool tests
- had istotech ( liquid food through a drip/porto cath) as he couldnt eat and lost a lot of weight
...and today...he rolled off the bed and has two little carpet burns and his little forehead to prove it!!!!!!!!
I was devastated- i was trying to erect the camping cot to prevent him for getting into danger and murphies while i was trying to prevent something happening this happened ! Thank Our Lord he is fine -I dont know what I was thinking! Silly and Tired Mom.... A lot of people have assured me this has happened to their kids before but I still feel awful about it!
I am AMAZED at all my little soldier has gone through, and he is still laughing and smiling and continues to be the light of my life - i learn something every day from him - his fighting spirit blows me away - he is already my hero at 10 months old, and will always be, God definitely chose Deqlan for a reason -he is the bravest, strongest, most courageous person i know - I love you with all my heart my Darling Boy - I knew I loved you before I met you - I knew that you where something extraordinary the day you where placed into my arms, 11 Sep 2006.You have already gone through more then our whole family put together, and more - Never ever ever forget how much I love and treasure you - I promise to take the best possible care of you ( never to roll off the bed again!!! ha ha ha) I promise to continue to teach you about Our Lord and Father God and I promise you we are going to get you better because our Faith is so strong and I believe with all my heart By Jesus Stripes YOU WILL BE HEALED!!!
i CANT WAIT TO SEE THE SCAN TOMMOROW WITH A GREAT RESULT!
Please say an extra special prayer for us tonight that Deqlans blood counts are good enough for us to go ahead with the 4th round of chemo, that he sails through as he has done the previous 3 rounds and that the scan shows fantastic progress.Please pray that Dr Dejager makes the correct decisions on where to from here and the correct doses of chemo to give to continue on our road to total and permanent health.
Sleep tight, lets stand together army , Deqlan can fight any battle with the Lord and with you all next to him
God Bless, All our love, till tommorow
Samm
Monday, July 23, 2007
Monday, the 22nd July 2007
We had a great weekend!
Deqlan continues to make us laugh and smile and beam with joy - his only word ( that we can make out ) at the moment is mamma - but the way he is saying it changes now - we know when he wants something and when he just wants to chat - its so cute to watch - I love him more and more each minute of the day!
Deqlan " attended" his first Birthday party for his friend Peyton who turns 1 tommorow. We went to deliver the gift and Deqlan slept in the car - we unfortunatley couldnt take Deqlan into the party as his immune system could be compromised and we have been told to avoid contact with little ones. So we will be dropping off gifts for all of Deqlans little friends so they know we are there in spirit! We recieved a lovely party pack full of Barney goodies and a purple balloon which Deqlan thoroughly enjoyed! He LOVES balloons! We are going to have 2 Birthday Parties for Deqlan - 1 now in Sep and another when he is healed and better so we can have all the kids over and its going to be amazing - cant wait to see Deqlans face with all I have planned!!!
We recieved another gift today from Denise, the most stunning cd called And Jesus Healed The All, Healing Praise for Your Children - how beautiful and special - Thank you again Denise, we love it and I cant wait to continue listening to it tommorow on the way to Nanna! This cd is unbelievably specail and continues to praise my favourite verse at the moment, BY JESUS STRIPES, DEQLAN IS HEALED!
We also recieved the most cutest pair of shoes i ordered a few weeks ago - Deqlan finds ways to get out of his shoes and socks - he loves being bare foot and loves not having clothes on, but in winter i have to insist he has something on - so hopefully these shoes stay on they are really stunning and im sure very comfy to!
We where so happy to be able to distract Deqlan with his very lamp today, while Nanna gave the neupogen injection, that he didnt even make a sound - i hate hearing my precious cry after these injections , although its not to bad, we think the alcohol swab to wipe the area already tells his mind whats coming! tommorow is the last 1 for this round, thank goodness!
Please continue to pray for our beautiful boy and extra special prayers for Thursday, that Deqlans blood count is great so we can go ahead with round 4 and that we see fantastic improvement on the scans they are going to do - promise to keep you all up to date! Please continue to pray for all of Deqlans friends that need all our prayers and support to!
Have a lovely week ahead and thanks to all of you who continue to send your messages,calls, posts, emails through and above all your prayers - what a wonderful army we have fighting this with Deqlan
All our love
Mark, Samm & Deqlan
Deqlan continues to make us laugh and smile and beam with joy - his only word ( that we can make out ) at the moment is mamma - but the way he is saying it changes now - we know when he wants something and when he just wants to chat - its so cute to watch - I love him more and more each minute of the day!
Deqlan " attended" his first Birthday party for his friend Peyton who turns 1 tommorow. We went to deliver the gift and Deqlan slept in the car - we unfortunatley couldnt take Deqlan into the party as his immune system could be compromised and we have been told to avoid contact with little ones. So we will be dropping off gifts for all of Deqlans little friends so they know we are there in spirit! We recieved a lovely party pack full of Barney goodies and a purple balloon which Deqlan thoroughly enjoyed! He LOVES balloons! We are going to have 2 Birthday Parties for Deqlan - 1 now in Sep and another when he is healed and better so we can have all the kids over and its going to be amazing - cant wait to see Deqlans face with all I have planned!!!
We recieved another gift today from Denise, the most stunning cd called And Jesus Healed The All, Healing Praise for Your Children - how beautiful and special - Thank you again Denise, we love it and I cant wait to continue listening to it tommorow on the way to Nanna! This cd is unbelievably specail and continues to praise my favourite verse at the moment, BY JESUS STRIPES, DEQLAN IS HEALED!
We also recieved the most cutest pair of shoes i ordered a few weeks ago - Deqlan finds ways to get out of his shoes and socks - he loves being bare foot and loves not having clothes on, but in winter i have to insist he has something on - so hopefully these shoes stay on they are really stunning and im sure very comfy to!
We where so happy to be able to distract Deqlan with his very lamp today, while Nanna gave the neupogen injection, that he didnt even make a sound - i hate hearing my precious cry after these injections , although its not to bad, we think the alcohol swab to wipe the area already tells his mind whats coming! tommorow is the last 1 for this round, thank goodness!
Please continue to pray for our beautiful boy and extra special prayers for Thursday, that Deqlans blood count is great so we can go ahead with round 4 and that we see fantastic improvement on the scans they are going to do - promise to keep you all up to date! Please continue to pray for all of Deqlans friends that need all our prayers and support to!
Have a lovely week ahead and thanks to all of you who continue to send your messages,calls, posts, emails through and above all your prayers - what a wonderful army we have fighting this with Deqlan
All our love
Mark, Samm & Deqlan
Thursday, July 19, 2007
UPDATE ON MOMMY SAMM
Mommy Samm was feeling and looking a little better today, but her pallor reflected her fatigue. Being the outstanding Mommy she is, she swiftly dealt with the pending upper respiratory tract infection yesterday by seeking urgent medical attention - an imperative action to limit any risk of cross-infection for Deqlan. Now Mommy, (just like Meggie, Grandpa and Nanna always do) had to give our Deqlan kisses on his head today. The beautiful baby smell of his hair is positively addictive and when one holds him, it is almost irrestible to NOT kiss him.
Today, Samm found out that she has the same blood group as Deqlan (A positive) and was immediately considering donating blood for the transfusion we are expecting Deqlan to need during his next chemo session. A mother's sacrifice knows no boundaries, despite Samm herself having extremely low blood pressure with a history of anaemia. Such is the love of this mother for her son. Mommy Samm is taking her medicine (and with Nanna as the proverbial "watchdog") and is doing "all the right things" to get well as quickly as possible. Samm is our "miracle Mom" and her commitment as a wife and mother is also demonstrated in her able management of the busy travel agency. Please say an extra special prayer for her quick and full recovery and that God may richly bless her so that she continues to be the best possible wife to Mark, Mother to Deqlan and a blessing to others.
Sacred Heart of Jesus, we ask that you embrace our treasured Samm and fill her with Your love, strength, peace, courage, faith and hope to effect her recovery. And Lord, always let her know how much she is loved by us.
Posted by Nanna (aka Mom to Samm)
Today, Samm found out that she has the same blood group as Deqlan (A positive) and was immediately considering donating blood for the transfusion we are expecting Deqlan to need during his next chemo session. A mother's sacrifice knows no boundaries, despite Samm herself having extremely low blood pressure with a history of anaemia. Such is the love of this mother for her son. Mommy Samm is taking her medicine (and with Nanna as the proverbial "watchdog") and is doing "all the right things" to get well as quickly as possible. Samm is our "miracle Mom" and her commitment as a wife and mother is also demonstrated in her able management of the busy travel agency. Please say an extra special prayer for her quick and full recovery and that God may richly bless her so that she continues to be the best possible wife to Mark, Mother to Deqlan and a blessing to others.
Sacred Heart of Jesus, we ask that you embrace our treasured Samm and fill her with Your love, strength, peace, courage, faith and hope to effect her recovery. And Lord, always let her know how much she is loved by us.
Posted by Nanna (aka Mom to Samm)
Thursday, 19th July 2007 - A SUNBEAM DAY
Deqlan had a good day, with the only real problems being his lack of appetite, especially for solids and his "fighting sleep". He was restless rather than active, but still had a fun time playing with his musical instruments, his train set, garden inspections of the flowers and birdlife, and watching his favourite DVD, Mae-Mae. Nanna put his feet into the very soft sand of the Zen garden and he appeared to love it as he started doing what can only be called a "jive" in order to disperse the sand. Nanna has a "hunch" that Deqlan, in time, will confer the title of "favourite place in Nanna's home" on the Zen garden. We watched "The Lion King" DVD together, but Mommy and Nanna certainly enjoyed it more than Deqlan. Just watch this space in the future though, as we are sure Deqlan will come to love the story and the music as much as we do.
We have a beautiful DVD of Bible Songs sung by children, ( thank you so much again Denise) and to lullaby him to sleep today, Nanna softly sang the tune "Jesus wants me for a sunbeam". How perfectly appropriate are these words as Deqlan is most certainly the most beautiful sunbeam in our lives, and is most certainly the brightest sunbeam for Jesus. Deqlan, at the tender age of 10 months has been the proverbial "sunbeam" in many persons' lives, from bringing some who "did not believe" to their knees and into church again to teaching and showing us how suffering - during his 3 surgeries - has to be bravely endured.
You may remember the words to this very special song:
"Jesus wants me for a sunbeam
To shine on Him each day,
To try in everyway to please Him
At home, at work, at play,
A sunbeam, a sunbeam, Jesus wants me for sunbeam
I'll be a sunbeam for Him"
His courage during his chemotherapy sessions is a most humbling experience with Deqlan having smiles for everyone (without epaulettes on their shoulders) and so radiates as a sunbeam for all the other patients in the ward as well !
We are so blessed to have our precious Deqlan in our lives. His smiles are a "tonic" and now that he can boast evidence of 4 top teeth to match his bottom two, he is as cute as a button whenever he smiles. His is now able to "carve" his way into a raw carrot, biltong, rusks and shortbread. When his appetite returns, we are sure we will see some changes as regards his newly-chosen menu. Every single day we have to share with him adds to our "beautiful book of memories". These blessings give us all the strength, faith and hope to face "the struggle" with an unformiddable passion to live the Word of God in our daily lives, and accept His will in all things.
Deqlan's daily Neupogen injections have commenced again (a six day course) and Nanna gives these with great love, as we all know how important they are to regenerate his bone marrow after its suppression due to the chemo. We are hopeful that round 4 of chemotherapy will be able to commence as planned next Thursday. 26th July, during which the all-important first reassessment will be done in order to ascertain the status of the neuroblastoma as a response to chemotherapy. We ask that your prayers continue and thank you all for your concern, support, and gifts of strength, love and encouragement. These prayers act as "food for our souls" and we are infused with their power and their hope each time you lift Deqlan and his family up in prayers.
Visiting the garden today, Deqlan and Nanna were very surprised to see some green leaves and buds already on the rosebushes. After the harsh winter, it would seem as if they cannot wait to flower - these flowers seem to be in a hurry to bloom, unlike us, who MUST be patient in the waiting - and during Deqlans healing - as it will all be done in HIS time and in HIS way and on HIS terms.
Mommy and Daddy's unconditional courage, determination, faith and hope continues to humble us all; they are an inspiration to our family and we love them dearly.
Posted by Nanna Bev
We have a beautiful DVD of Bible Songs sung by children, ( thank you so much again Denise) and to lullaby him to sleep today, Nanna softly sang the tune "Jesus wants me for a sunbeam". How perfectly appropriate are these words as Deqlan is most certainly the most beautiful sunbeam in our lives, and is most certainly the brightest sunbeam for Jesus. Deqlan, at the tender age of 10 months has been the proverbial "sunbeam" in many persons' lives, from bringing some who "did not believe" to their knees and into church again to teaching and showing us how suffering - during his 3 surgeries - has to be bravely endured.
You may remember the words to this very special song:
"Jesus wants me for a sunbeam
To shine on Him each day,
To try in everyway to please Him
At home, at work, at play,
A sunbeam, a sunbeam, Jesus wants me for sunbeam
I'll be a sunbeam for Him"
His courage during his chemotherapy sessions is a most humbling experience with Deqlan having smiles for everyone (without epaulettes on their shoulders) and so radiates as a sunbeam for all the other patients in the ward as well !
We are so blessed to have our precious Deqlan in our lives. His smiles are a "tonic" and now that he can boast evidence of 4 top teeth to match his bottom two, he is as cute as a button whenever he smiles. His is now able to "carve" his way into a raw carrot, biltong, rusks and shortbread. When his appetite returns, we are sure we will see some changes as regards his newly-chosen menu. Every single day we have to share with him adds to our "beautiful book of memories". These blessings give us all the strength, faith and hope to face "the struggle" with an unformiddable passion to live the Word of God in our daily lives, and accept His will in all things.
Deqlan's daily Neupogen injections have commenced again (a six day course) and Nanna gives these with great love, as we all know how important they are to regenerate his bone marrow after its suppression due to the chemo. We are hopeful that round 4 of chemotherapy will be able to commence as planned next Thursday. 26th July, during which the all-important first reassessment will be done in order to ascertain the status of the neuroblastoma as a response to chemotherapy. We ask that your prayers continue and thank you all for your concern, support, and gifts of strength, love and encouragement. These prayers act as "food for our souls" and we are infused with their power and their hope each time you lift Deqlan and his family up in prayers.
Visiting the garden today, Deqlan and Nanna were very surprised to see some green leaves and buds already on the rosebushes. After the harsh winter, it would seem as if they cannot wait to flower - these flowers seem to be in a hurry to bloom, unlike us, who MUST be patient in the waiting - and during Deqlans healing - as it will all be done in HIS time and in HIS way and on HIS terms.
Mommy and Daddy's unconditional courage, determination, faith and hope continues to humble us all; they are an inspiration to our family and we love them dearly.
Posted by Nanna Bev
Wednesday, July 18, 2007
HOME SWEET HOME
Just a quick note today to let you know we are home!
We only left the hospital just before 10 last night - so we are exhausted today!
Our next session starts 26 July - we wil be admitted, blood tests done and then we are going to have a scan done of Deqlans abdomen and head to check on the progress of the tumors - i know that they have already shrivelled up and they are screaming as they die so i know we are going to see some progress from the scans. We will then have another 3 rounds of chemo in hospital and then another 3 day visits before the surgery to remove the tumor
Please pray Deqlan blood count is good enough for us to continue with round 4 and that the scans show amazing results! Doctor seems to think he will need some blood next time around as he is getting pale..
Deqlan seems to be ok today, still smiling and laughing but seems to be a little nauseous , and not much of an appetite again - his ear stills seems to be worrying him, but we are busy cutting another tooth so could be that to!
I was at the doc today as my throat has started tingling and sore ears so had to get in before i get worse and make Deqlan sick
Hoping to write a more detailed blog soon - thanks so much again for all your amazing and much appreciated support our loyal army for Deqlan!
We heard from our friend Yolandi, they are still waiting for a final diagnosis on Miluska, but it looks like neuroblastoma or another type of cancer that is not treatable - we ask you to please pray for the best result possible and that chemo will also completely and permanently heal Miluska.
Please continue to pray for us and all of our friends that need each and every prayer.
God Bless - we can do all things through Christ we strengthens us
We only left the hospital just before 10 last night - so we are exhausted today!
Our next session starts 26 July - we wil be admitted, blood tests done and then we are going to have a scan done of Deqlans abdomen and head to check on the progress of the tumors - i know that they have already shrivelled up and they are screaming as they die so i know we are going to see some progress from the scans. We will then have another 3 rounds of chemo in hospital and then another 3 day visits before the surgery to remove the tumor
Please pray Deqlan blood count is good enough for us to continue with round 4 and that the scans show amazing results! Doctor seems to think he will need some blood next time around as he is getting pale..
Deqlan seems to be ok today, still smiling and laughing but seems to be a little nauseous , and not much of an appetite again - his ear stills seems to be worrying him, but we are busy cutting another tooth so could be that to!
I was at the doc today as my throat has started tingling and sore ears so had to get in before i get worse and make Deqlan sick
Hoping to write a more detailed blog soon - thanks so much again for all your amazing and much appreciated support our loyal army for Deqlan!
We heard from our friend Yolandi, they are still waiting for a final diagnosis on Miluska, but it looks like neuroblastoma or another type of cancer that is not treatable - we ask you to please pray for the best result possible and that chemo will also completely and permanently heal Miluska.
Please continue to pray for us and all of our friends that need each and every prayer.
God Bless - we can do all things through Christ we strengthens us
Monday, July 16, 2007
Monday, the 16th July 2007
"LETS GET READY TO RUMBLE" The 3rd round has begun! Deqlan was given the all clear this morning after the blood tests - his blood looks great and we could proceed with the chemo
Deqlan was a star at putting the porto cath needle in - but cried and protested as we had to hold him still to have it put in and to have his check up!
Its a very busy day here today, we met another friend, Ilse who is 13 and has cancer in her hip- she has been going through chemo since november last year. What a lovely girl! Deqlan was definitely taken by her and was playing with her lovely woolen hat and even put his arms out to go to her. He was quite happy sitting in Ilse's arms and the two of them definitely have a connection already.Koketso, our friend with lymphblastoma , is looking great - the difference in his eye and face is fantastic and so inspiring! Our friend Charlise, the 4 year old little girl also with neuroblastoma arrives tommorow for her treatment , looking foward to seeing her and checking in on her progress.
We recieved a lovely message from another family in the USA , with a beautiful daughter Kate, also neuroblastoma - she also started another round of chemo this morning - we recieved lovely words from them and ask you to continue to keep all our friends in your prayers for Deqlan and please add Kate on to.
Keira, had the majority of her tumor removed last week and is doing very well - her parents are waiting the results of the biopsy of the remainder of this tumor to determine the next step - please pray for fantastic results!
Please also pray for Miluska and her parents, we are waiting to hear results from the surgery she had last week to remove the tumor close to her kidneys
Deqlan seemed to sail through the chemo today - with lots of smiles and cheeky grins - his two top teeth are clearly visible now and he looks as cute as ever ! He is full of gorgeous expressions, curiosity and he just makes my heart fill with love and happiness each time i look at him! He kept Nanna and Meggy and Grandpa highly entertained today ! He definitely has a mischevous streak in him and fights when he doesnt get his way - the latest in the protesting is clothes ( which he has always dislike)and nappy changes - it takes me a good few minutes to pin him down long enough for the nappy change - mark snapped a photo tonight of Deqlan in his Birthday suite helping me update the blog !!
Deqlan just seemed to be very tired this afternoon and had a looonnnggg sleep - which is great cause you heal when you sleep!
We started the day with vincristine as normal, then moved onto etoposide, then onto a new drug called chlorophosphimide - we are now having an infusion of medicine to protect Deqlan from the harmful effects this specific drug could have on his bladder. We have another etoposide tommorow for 4 hours and then we can go home tommorow afternoon.
We will be back in about 2 weeks i suspect - where we have the 4th round and the very important re assessment - Dr De Jager what type of scan we are going to do , but probably a MRI scan to check on the progress of the tumor on the adrenal gland and the secondary on his eye - I know the results are going to show a great improvement and cant wait to see this thing shrinking and fading away ! Wil confirm details once doc has given them to us
Well let me sign off for the evening - sleep tight, God Bless and please continue to pray for our gorgeous Deqlan
Sacred heart of Jesus, we place our trust on thee, all for thee Oh Lord, Oh My Jesus , all for me
Deqlan was a star at putting the porto cath needle in - but cried and protested as we had to hold him still to have it put in and to have his check up!
Its a very busy day here today, we met another friend, Ilse who is 13 and has cancer in her hip- she has been going through chemo since november last year. What a lovely girl! Deqlan was definitely taken by her and was playing with her lovely woolen hat and even put his arms out to go to her. He was quite happy sitting in Ilse's arms and the two of them definitely have a connection already.Koketso, our friend with lymphblastoma , is looking great - the difference in his eye and face is fantastic and so inspiring! Our friend Charlise, the 4 year old little girl also with neuroblastoma arrives tommorow for her treatment , looking foward to seeing her and checking in on her progress.
We recieved a lovely message from another family in the USA , with a beautiful daughter Kate, also neuroblastoma - she also started another round of chemo this morning - we recieved lovely words from them and ask you to continue to keep all our friends in your prayers for Deqlan and please add Kate on to.
Keira, had the majority of her tumor removed last week and is doing very well - her parents are waiting the results of the biopsy of the remainder of this tumor to determine the next step - please pray for fantastic results!
Please also pray for Miluska and her parents, we are waiting to hear results from the surgery she had last week to remove the tumor close to her kidneys
Deqlan seemed to sail through the chemo today - with lots of smiles and cheeky grins - his two top teeth are clearly visible now and he looks as cute as ever ! He is full of gorgeous expressions, curiosity and he just makes my heart fill with love and happiness each time i look at him! He kept Nanna and Meggy and Grandpa highly entertained today ! He definitely has a mischevous streak in him and fights when he doesnt get his way - the latest in the protesting is clothes ( which he has always dislike)and nappy changes - it takes me a good few minutes to pin him down long enough for the nappy change - mark snapped a photo tonight of Deqlan in his Birthday suite helping me update the blog !!
Deqlan just seemed to be very tired this afternoon and had a looonnnggg sleep - which is great cause you heal when you sleep!
We started the day with vincristine as normal, then moved onto etoposide, then onto a new drug called chlorophosphimide - we are now having an infusion of medicine to protect Deqlan from the harmful effects this specific drug could have on his bladder. We have another etoposide tommorow for 4 hours and then we can go home tommorow afternoon.
We will be back in about 2 weeks i suspect - where we have the 4th round and the very important re assessment - Dr De Jager what type of scan we are going to do , but probably a MRI scan to check on the progress of the tumor on the adrenal gland and the secondary on his eye - I know the results are going to show a great improvement and cant wait to see this thing shrinking and fading away ! Wil confirm details once doc has given them to us
Well let me sign off for the evening - sleep tight, God Bless and please continue to pray for our gorgeous Deqlan
Sacred heart of Jesus, we place our trust on thee, all for thee Oh Lord, Oh My Jesus , all for me
Sunday, July 15, 2007
sunday, the 15th of July 2007
What a lovely lunch we had! Nanna spoilt us rotten by making a roast with all the trimmings! It was a thanks giving lunch to thank each other for all the support and love and prayers and being there for each other and most of all to thank Our Lord for getting us to this point and that Deqlan has responded well to the chemo so far!
Deqlan was tugging on his ear on Friday, Nanna had a look with the machine she has and said they where indeed red and we eventually got a doctor at our local gp to agree to come out to the car ( we are not willing to take him into a doctors rooms or hospital due to his immune system) What a lovely Doc it was , she had already wiped everything with alcohol and was so willing to chck his ears for us - turns out he has a middle ear infection and needed an antibiotic. Doc called Dr De Jager to make sure it was ok to give antibiotics which he agreed to - we are so glad we didnt leave it - he is still tugging on it a bit , but not moaning at all - so praying it will just continue to heal and get better!
We had a lovely service at church last night and we are blow away at he amount of people who come up to us and ask about Deqlan. One lady , we does promos etc for Kellogs, told us that a 15 year old boy had won a competition and won a huge character soft toy of"pop" and he wanted her to give the teddy to a sick little boy - and guess who they chose!! What amazing children we have in this world - we hope to put a picture up asap ! We are so greatful Gilliad Lebanon for this gorgeous teddy and hope to be in touch soon with you to thank you personally!
Please can we ask you all for your prayers for our third round of chemo tommorow till tuesday evening - please pray that we still continue to have the amazing effect it has had so far and that Deqlan continues to have no side affects
Praise and rejoice in Our Lord - he is great and I know he is healing Deqlan as i type this!
Nanna will try and type a more detailed blog and update tommorow from room 23 from Little Company of Mary!
God Bless and Lots of Love to you all
Mark, Samm & Deqlan
ps - Happy Birthday Gran for tommorow ! Have a lovely day and we thank you and Uncle Henk for all your love and support and continued prayers
Deqlan was tugging on his ear on Friday, Nanna had a look with the machine she has and said they where indeed red and we eventually got a doctor at our local gp to agree to come out to the car ( we are not willing to take him into a doctors rooms or hospital due to his immune system) What a lovely Doc it was , she had already wiped everything with alcohol and was so willing to chck his ears for us - turns out he has a middle ear infection and needed an antibiotic. Doc called Dr De Jager to make sure it was ok to give antibiotics which he agreed to - we are so glad we didnt leave it - he is still tugging on it a bit , but not moaning at all - so praying it will just continue to heal and get better!
We had a lovely service at church last night and we are blow away at he amount of people who come up to us and ask about Deqlan. One lady , we does promos etc for Kellogs, told us that a 15 year old boy had won a competition and won a huge character soft toy of"pop" and he wanted her to give the teddy to a sick little boy - and guess who they chose!! What amazing children we have in this world - we hope to put a picture up asap ! We are so greatful Gilliad Lebanon for this gorgeous teddy and hope to be in touch soon with you to thank you personally!
Please can we ask you all for your prayers for our third round of chemo tommorow till tuesday evening - please pray that we still continue to have the amazing effect it has had so far and that Deqlan continues to have no side affects
Praise and rejoice in Our Lord - he is great and I know he is healing Deqlan as i type this!
Nanna will try and type a more detailed blog and update tommorow from room 23 from Little Company of Mary!
God Bless and Lots of Love to you all
Mark, Samm & Deqlan
ps - Happy Birthday Gran for tommorow ! Have a lovely day and we thank you and Uncle Henk for all your love and support and continued prayers
Thursday, July 12, 2007
Thursday, the 12th July 2007
We had a great eating day today! Nanna used her imagination and mixed some yoghurt into Deqlans cereal which he loved and we got him to eat a bit more of it then usual! We also treated Deqlan to some more of great grandads soup which he loves - followed by avo! In between little pieces of chocolate to reward him for eating so well! Naughty Mom -but as long as he enjoys what he is eating and he is eating thats the main thing!
Grandpa has even commented that his cheeks are looking a little rounder!
Deqlans teeth are very prominent today and we looked in awe at them each time he smiled and laughed - he is going to look to adorable when they are all out! They dont seem to be sore anymore - glad and hope he is pain free for his other teeth for a while to come!
I can officially break some wonderful news.....Meggy is pregnant! Conrad & Meggy expect their first little miracle to arrive around 14 Feb 2008 - they had a scan today and loved seeing their forming little one and hear a very very strong heartbeat ! How exciting and what a miracle we have to look foward to - Conrad and Meggy are going to make the most amazing parents - their love for Deqlan and Logan is incredible - they look after them like they are their own and Deqlan and Logan continue to love and enjoy them more each day
We really miss Logan - not being able to see her every second weekend is heartsore , but luckily Dad got to see her last weekend took her to her favourite restaurant - Spur - shame - she is too young to understand all of this but we continue to ensure she know she is loved very very much
Have a lovely evening and please continue to pray for a complete and permanent healing for our beautiful soldier Deqlan - we cant thank you enough for your unbelievable support - what an army we have fighting for Deqlan - I know Our Lord is listening and may he Bless you all and protect and keep you safe
Lots of Love and God Bless you all
Grandpa has even commented that his cheeks are looking a little rounder!
Deqlans teeth are very prominent today and we looked in awe at them each time he smiled and laughed - he is going to look to adorable when they are all out! They dont seem to be sore anymore - glad and hope he is pain free for his other teeth for a while to come!
I can officially break some wonderful news.....Meggy is pregnant! Conrad & Meggy expect their first little miracle to arrive around 14 Feb 2008 - they had a scan today and loved seeing their forming little one and hear a very very strong heartbeat ! How exciting and what a miracle we have to look foward to - Conrad and Meggy are going to make the most amazing parents - their love for Deqlan and Logan is incredible - they look after them like they are their own and Deqlan and Logan continue to love and enjoy them more each day
We really miss Logan - not being able to see her every second weekend is heartsore , but luckily Dad got to see her last weekend took her to her favourite restaurant - Spur - shame - she is too young to understand all of this but we continue to ensure she know she is loved very very much
Have a lovely evening and please continue to pray for a complete and permanent healing for our beautiful soldier Deqlan - we cant thank you enough for your unbelievable support - what an army we have fighting for Deqlan - I know Our Lord is listening and may he Bless you all and protect and keep you safe
Lots of Love and God Bless you all
Wednesday, July 11, 2007
Wednesday 11th July 2007 - 10 MONTH'S OLD TODAY
At precisely 08h17rs today, our precious Deqlan Ross Higgins was 10 months old. Not even the bitterly cold morning could dampen our joy as he and Mommy arrived at Nanna's home who greeted them with a modified version of "Happy Birthday" to sing "Happy 10 months today" !
Deqlan's huge smile was our reward and with a burst of energy had a quick look around to ensure all his toys and games in his giant playpen (made by Grandpa himself, piece by piece of wood, bead by bead in abacus form set at intervals and different levels on all four panels - and assisted by Daddy in the assembly part) were as he left them the previous day. The large fan in the lounge has always been an attraction for Deqlan, from the earliest days when he had begun to focus his eyes on specific objects. There is something about fans which fascinate him, but of course, at this time of year, they are not operational, and have given way to careful use of the air conditioners and/or oil heaters to maintain an even temperature throughout his "home in the week" - Grandpa and Nanna's home.
Deqlan enjoyed his "special day" and got to experiment with many different foods and textures. His appetite, previously large, has definitely decreased as a result of the chemo, so Mommy and Nanna have had to practice trial and error in the frequency and quantity of foods. Today, Deqlan enjoyed a variety of old and new tastes, ranging from caramel cereal, to lamb and vegetables, to mashed avocado, to great-grandpa's home made soup, to sampling some carob and some full cream white chocolate. The concentration on Deqlan's face and his jaw movements inform one very promptly if the food is favoured with real gusto, merely favoured at a push or not favoured at all.
Deqlan still seems to be very tired and must still regain his previous energy levels, all in good time. We try and get him to rest and avoid over-stimulation so he can play with his toys in a relaxed manner. He has good quality naps throughout the day and this can only serve as a boost to his immune system. He seems to be slowly regaining weight, evidenced by the roundness of his cheeks and their beautiful rosy colour. Indeed, to observe Deqlan sleeping is a privilege, an honour and a blessing, as he looks angelic. Deqlan is certainly a beautiful baby boy, and one marvels at God's magnificent creation of this prayerful child of God, and soldier and warrior for Jesus.
Yesterday, the 10 year old son of an admin employee at Uncle Conrad's business sent a toy for Deqlan, purchased via a serious accumulation of his pocket money over the past few weeks which he had specifically saved. Thank you so much Lourens; Deqlan loved your present of a "buzzing and colourful butterfly" and the creation of your very own card. We will keep your card and add it to Deqlan's amazing story of courage, bravery and victory. God bless you for being so kind and please continue to ask Jesus to heal Deqlan.
Grandpa arrived from work with a new bath for Deqlan as well as some new DVD's which were viewed by us all before lunch. Deqlan adores the musical DVD's and soaks up all the harmony created by the various musical instruments. Even at his tender age, he appreciates the serenity of classical music, especially, Beethoven, Bach and Strauss. He also loves his gospel songs, especially, "Jesus loves me, This I know, for the bible tells me so!" and "Jesus wants me for a sunbeam". Mommy, Nanna and Megs sing along with gay abandon and the trio performance gets a few raised eyebrows from Deqlan now and again, just stopping short of the look which says "girls, do NOT give up your day jobs!". Grandpa and Deqlan have started their very own form of communication with the development of a "language", with Deqlan imitating Grandpa's verbal chanting of sounds. Guess who is first to "run out of steam" ?
He is fascinated by the antics of the dogs at Nanna's house and their mere "running riot" outside or their exposure allowed in only certain areas of the house, always results in a huge grin of delight. Deqlan's fascination extends to anything and everything which is a wheel or has a wheel shape. To this end, he delights in placing his little finger or thumb on a moving wheel to get it to stop - this game even extends to the wheels of his battery operated toy train, friction powered cars or any pull-along toy which rolls.
Today, Deqlan completed his second round of bone-marrow-regenerating injections and Mommy and Nanna once again salute his bravery and courage of the past 6 days since this course of injections commenced. Deqlan has enjoyed "a normal week" at home and faces his third round of chemotherapy next Monday, 16th July 2007 and most likely, there will be another course of these injections to complete. Concerning Deqlan's healing journey, whatever NEEDS to be done, IS done, and will continue TO BE DONE, with pure devotion and dedication, with love, with hope, and with the utmost faith that our Lord hears every prayer that is prayed for Deqlan's recovery.
Mommy and Daddy are feeling stronger, unconditionally commited to the most powerful faith and hope, and are more adamant than ever that God has already healed their beautiful son. They understand so very well the fact that faith comes from and is strengthened by reading and studying the word of God, and by "putting feet to their prayers". They also know that faith goes beyond merely believing but by putting this faith into practice on a daily basis. Mere belief can be passive, but faith must be active - FAITH ACTS ON WHAT IT BELIEVES. FAITH GUARANTEES VICTORY as it instantly summons God's miracle-working power. God assures us that He will reward full-of-faith prayers because they show dependance on Him for healing and the belief is there that God WILL work the miracle, even if it will be in His way, in His time and on His terms. God bless Mommy Samm and Daddy Mark and may their FAITH, HOPE AND LOVE, be a source of continual and continous strength to them, and may God cause their cups to runneth over with these and other blessings.
We ask that your devotional prayers contuinue for our precious Deqlan and his whole family, and thank everyone for their priceless gift of the blessings of prayer.
Posted by Nanna (aka Bev, Mom and Nanna).
Deqlan's huge smile was our reward and with a burst of energy had a quick look around to ensure all his toys and games in his giant playpen (made by Grandpa himself, piece by piece of wood, bead by bead in abacus form set at intervals and different levels on all four panels - and assisted by Daddy in the assembly part) were as he left them the previous day. The large fan in the lounge has always been an attraction for Deqlan, from the earliest days when he had begun to focus his eyes on specific objects. There is something about fans which fascinate him, but of course, at this time of year, they are not operational, and have given way to careful use of the air conditioners and/or oil heaters to maintain an even temperature throughout his "home in the week" - Grandpa and Nanna's home.
Deqlan enjoyed his "special day" and got to experiment with many different foods and textures. His appetite, previously large, has definitely decreased as a result of the chemo, so Mommy and Nanna have had to practice trial and error in the frequency and quantity of foods. Today, Deqlan enjoyed a variety of old and new tastes, ranging from caramel cereal, to lamb and vegetables, to mashed avocado, to great-grandpa's home made soup, to sampling some carob and some full cream white chocolate. The concentration on Deqlan's face and his jaw movements inform one very promptly if the food is favoured with real gusto, merely favoured at a push or not favoured at all.
Deqlan still seems to be very tired and must still regain his previous energy levels, all in good time. We try and get him to rest and avoid over-stimulation so he can play with his toys in a relaxed manner. He has good quality naps throughout the day and this can only serve as a boost to his immune system. He seems to be slowly regaining weight, evidenced by the roundness of his cheeks and their beautiful rosy colour. Indeed, to observe Deqlan sleeping is a privilege, an honour and a blessing, as he looks angelic. Deqlan is certainly a beautiful baby boy, and one marvels at God's magnificent creation of this prayerful child of God, and soldier and warrior for Jesus.
Yesterday, the 10 year old son of an admin employee at Uncle Conrad's business sent a toy for Deqlan, purchased via a serious accumulation of his pocket money over the past few weeks which he had specifically saved. Thank you so much Lourens; Deqlan loved your present of a "buzzing and colourful butterfly" and the creation of your very own card. We will keep your card and add it to Deqlan's amazing story of courage, bravery and victory. God bless you for being so kind and please continue to ask Jesus to heal Deqlan.
Grandpa arrived from work with a new bath for Deqlan as well as some new DVD's which were viewed by us all before lunch. Deqlan adores the musical DVD's and soaks up all the harmony created by the various musical instruments. Even at his tender age, he appreciates the serenity of classical music, especially, Beethoven, Bach and Strauss. He also loves his gospel songs, especially, "Jesus loves me, This I know, for the bible tells me so!" and "Jesus wants me for a sunbeam". Mommy, Nanna and Megs sing along with gay abandon and the trio performance gets a few raised eyebrows from Deqlan now and again, just stopping short of the look which says "girls, do NOT give up your day jobs!". Grandpa and Deqlan have started their very own form of communication with the development of a "language", with Deqlan imitating Grandpa's verbal chanting of sounds. Guess who is first to "run out of steam" ?
He is fascinated by the antics of the dogs at Nanna's house and their mere "running riot" outside or their exposure allowed in only certain areas of the house, always results in a huge grin of delight. Deqlan's fascination extends to anything and everything which is a wheel or has a wheel shape. To this end, he delights in placing his little finger or thumb on a moving wheel to get it to stop - this game even extends to the wheels of his battery operated toy train, friction powered cars or any pull-along toy which rolls.
Today, Deqlan completed his second round of bone-marrow-regenerating injections and Mommy and Nanna once again salute his bravery and courage of the past 6 days since this course of injections commenced. Deqlan has enjoyed "a normal week" at home and faces his third round of chemotherapy next Monday, 16th July 2007 and most likely, there will be another course of these injections to complete. Concerning Deqlan's healing journey, whatever NEEDS to be done, IS done, and will continue TO BE DONE, with pure devotion and dedication, with love, with hope, and with the utmost faith that our Lord hears every prayer that is prayed for Deqlan's recovery.
Mommy and Daddy are feeling stronger, unconditionally commited to the most powerful faith and hope, and are more adamant than ever that God has already healed their beautiful son. They understand so very well the fact that faith comes from and is strengthened by reading and studying the word of God, and by "putting feet to their prayers". They also know that faith goes beyond merely believing but by putting this faith into practice on a daily basis. Mere belief can be passive, but faith must be active - FAITH ACTS ON WHAT IT BELIEVES. FAITH GUARANTEES VICTORY as it instantly summons God's miracle-working power. God assures us that He will reward full-of-faith prayers because they show dependance on Him for healing and the belief is there that God WILL work the miracle, even if it will be in His way, in His time and on His terms. God bless Mommy Samm and Daddy Mark and may their FAITH, HOPE AND LOVE, be a source of continual and continous strength to them, and may God cause their cups to runneth over with these and other blessings.
We ask that your devotional prayers contuinue for our precious Deqlan and his whole family, and thank everyone for their priceless gift of the blessings of prayer.
Posted by Nanna (aka Bev, Mom and Nanna).
Tuesday, July 10, 2007
Monday, July 9, 2007
The weekend was wonderful - spent it in doors playing and sorting things out! We had visits from Nanna and Grandpa and Meggy and watched all our favourite DVDS !
Deqlan had his first proper bath i a month - it has been impossible to bath Deqlan as we where used to due to us being in hospital and due to the stitches or other areas we had to keep dry - he was a little unsure at first, but then LOVED every single second and smiled and laughed and kicked so much Nanna looked like she had had a bath to!
Nanna also has to give another 6 days of neupogen to help Deqlans bone marrow regenerate - he is actually so brave and only cries for a few seconds and then realises its not so sore after all..he is such a brave boy
On Sunday, was anointing of the sick at Great Grandpas church - we unfortunately could not attend as we are not allowed to take Deqlan to public places due to chance of infection - but Nanna and Great Grandpa arranged for us to have a privat Blessing from Father Vincent on Sunday afternoon. It was lovely , and so special - Deqlan actually got confirmed - the anointing of the sick clears all sins , and as Deqlan has not sinned Father confirmed him! He was all laughs and smiles during this very special happening and recieved the anointing of the Holy Spirit. Hope to post some photos of this soon
Today, we went back to Nannas house and started getting back into our "normal" routine ! We arrived to find no electricity and waited the entire day for it to return - by 1500 we had to leave as I had to catch up on some work ! Very frustrating but managed to do a bit of catch up tonight while Deqlan lies peacefully catching up on some sleep!
But Deqlan had a ball today playing with the chimes he LOVES so much, playng with his trains and laughing and giggling at the funny faces and sounds we make to make him laugh - what a precious boy he is - i cant get enough of him!
We still not eating all that well - but discovering that Deqlan is definitely more interested in big people food now - he tasted custard for the first time today and LOVED IT as much Logan does. He seems to LOVE the woolies baby food and has gone off purity completely - so woolies it is - even tried to make him fresh vegies and fruit, but not interested - so we will keep up trying until we find what Deqlan enjoys ! At least he is eating a little more...
On 11 July Deqlan will be 10 months old! Cant believe how the time has flown - he has definitel mastered the art of crawling and definitely wanting to pull himself up onto things ..he loves being on the floor and thinks he can run and walk already!
Hope you all sleep tight , God Bless and thank you for your continued support,prayers and love
Deqlan had his first proper bath i a month - it has been impossible to bath Deqlan as we where used to due to us being in hospital and due to the stitches or other areas we had to keep dry - he was a little unsure at first, but then LOVED every single second and smiled and laughed and kicked so much Nanna looked like she had had a bath to!
Nanna also has to give another 6 days of neupogen to help Deqlans bone marrow regenerate - he is actually so brave and only cries for a few seconds and then realises its not so sore after all..he is such a brave boy
On Sunday, was anointing of the sick at Great Grandpas church - we unfortunately could not attend as we are not allowed to take Deqlan to public places due to chance of infection - but Nanna and Great Grandpa arranged for us to have a privat Blessing from Father Vincent on Sunday afternoon. It was lovely , and so special - Deqlan actually got confirmed - the anointing of the sick clears all sins , and as Deqlan has not sinned Father confirmed him! He was all laughs and smiles during this very special happening and recieved the anointing of the Holy Spirit. Hope to post some photos of this soon
Today, we went back to Nannas house and started getting back into our "normal" routine ! We arrived to find no electricity and waited the entire day for it to return - by 1500 we had to leave as I had to catch up on some work ! Very frustrating but managed to do a bit of catch up tonight while Deqlan lies peacefully catching up on some sleep!
But Deqlan had a ball today playing with the chimes he LOVES so much, playng with his trains and laughing and giggling at the funny faces and sounds we make to make him laugh - what a precious boy he is - i cant get enough of him!
We still not eating all that well - but discovering that Deqlan is definitely more interested in big people food now - he tasted custard for the first time today and LOVED IT as much Logan does. He seems to LOVE the woolies baby food and has gone off purity completely - so woolies it is - even tried to make him fresh vegies and fruit, but not interested - so we will keep up trying until we find what Deqlan enjoys ! At least he is eating a little more...
On 11 July Deqlan will be 10 months old! Cant believe how the time has flown - he has definitel mastered the art of crawling and definitely wanting to pull himself up onto things ..he loves being on the floor and thinks he can run and walk already!
Hope you all sleep tight , God Bless and thank you for your continued support,prayers and love
Friday, July 6, 2007
Friday, the 6th July 2007 - HOME AT LAST !
Our very precious Baby Deqlan Ross Higgins was discharged yesterday(Thursday, 5th July) and left the Little Company of Mary Oncology Unit dressed to greet the cold wind outside, but with a huge grin of victory and an unforgettable smile of courage. With the second round of chemotherapy behind him, Mommy, Daddy, Megs and Nanna were in awe of our "beautiful soldier and warrior" winning another episode in this "war". Deqlan seemed to "tolerate" the chemo without any noticeable nausea or vomiting spells, and the only side-effects were manageable, being fatigue and numerous soiled nappies of a specific kind.
The paediatric oncologist came to examine Deqlan just before his discharge and it is something quite extraordinary to observe how "relaxed" Deqlan is with him. Dr de Jager has indeed a very special relationship with our Deqlan and is able to palpate and use his stethoscope without so much as a murmur from Deqlan (unlike other doctors or nurses). The two "eyeball" each other and communicate with their eyes which speak a language which they only understand. Deqlan goes so far as to reach out to be held by him and responds to his various endearments. This is the surest sign of trust and faith from Deqlan towards this special man who is acting as one of God's human instruments in effecting Deqlan's complete and permanent healing.
Deqlan has certainly been "more himself" after this latest surgery, undertaken by a different surgeon. His inimitable laugh, specific responses to his favourite toys and to relevant people were a sure sign to us all that he is finally free of the "intestinal obstructions" which tormented him in the past. His beautiful smile, with his nose "crinkling up" in the cutest fashion ever, is our reward when we are with him. Nanna regards every second spent with him as priceless moments in time. Both Mommy and Daddy's home and Nanna's home are prepared for "infection control", especially after his chemo round which has understandably left him very immunocompromised. We just cannot be too careful and have had to lay down "strict do's and don'ts" to protect Deqlan, as even slight or mild infections can have very serious consequences for him; in fact, they can prove fatal.
Today was a great day, with Deqlan tasting some of great grandpa's home-made vegetable soup, which he loved and he finished his first serving of rooibos tea with relish!!! Deqlan is still having "bad dreams", probably a result of all the trauma to which he has been subjected as a result of the repeated surgeries and the relevant procedures that went with them. Mommy, Daddy, Nanna and/or Megs ensure we are always close at hand to reassure him during these episodes which we know will subside with time, with continued prayer and with all the love he receives from his family. He just adores his doggies, Shelby and Stuffy, the kitty, Blue as well as Nanna's doggies Otto and Benji and he grins every time he sees one of his beloved pets.
Deqlan's collection of froggies (we love them as they are our symbol of "Forever and Fully Reliant on God" (F.R.O.G.) is growing substantially, as is his collection of soft toys, each of which have a very special place in his heart.
The coming weekend will no doubt be enjoyed in the confines of his home (due to his immunosuppression) but Mommy and Daddy, Nanna, Grandpa, Megs and Conrad, all being well and healthy, will ensure "entertainment" of the highest calibre. One of Deqlan's favourite pastimes at home is watching the washing machine go round and round, so he doesn't need a fully fledged cabaret show to keep him happy. It is important that anyone (who have even a slight cold or who have been in contact with sick children or adults) visiting Deqlan's home, is required to wear a mask and perform stringent hand-washing before contact with Deqlan is regarded as safe.
Nanna has been tasked with giving Deqlan a series of six subcutaneous injections (Neupogen) which will ensure regeneration of his bone marrow (after the suppression by the chemotherapeutic agents). These injections will follow each and every chemotherapy session. Nanna has had to come up with some creative ideas to preserve the sacred trust relationship she shares with her adored Deqlan.
Daddy is enjoying his new job and looks like a sauve male model every morning he leaves for work. His smile is wider these days, the "sun is shining" again. As for Mommy, catching up on lost sleep is a priority, but this can only be undertaken when baby sleeps as well. Mommy has performed "miracles" by coping with beautiful Deqlan during the day and catching up on running the travel agency at night. She has been doing this for a month, and believe it or not, has not lost a single watt of her "glow", and her faith in God's love, mercy and plan, is unshakable, unquestionable and eternal. It is beautiful to observe this Mother and Son's unique relationship and Deqlan's excitement in response to his Daddy's arrival every time, is testimony to the special relationship Daddy and Deqlan share.
We thank our precious Lord and Saviour for the love, peace, strength, courage and mercy He has bestowed upon all of us. We humbly offer our praise in loving thanks for the "miracles" He has already given us, in His own way, in His own time and on His own terms. You Lord are the Greatest Physician of All and we KNOW you have a plan for Deqlan. We all are energized by and have the greatest faith in God's word which states:
"I know the plans I have for you", declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future"
Jeremiah 29:11.
Sacred Heart of Jesus, we place our trust in Thee, All for Thee o Lord, o my Jesus, all for Thee.
Please continue to pray for Deqlan, Mommy Daddy, the whole family and all Deqlan's "other friends" he has met during his journey. It is so vitally important to THANK our Lord for what he has done for Deqlan to date and we trust so completely that He will continue to carry Deqlan very close to His sacred heart and enfold our precious baby in His love and mercy.
Posted by Nanna (aka Bev Bourne).
The paediatric oncologist came to examine Deqlan just before his discharge and it is something quite extraordinary to observe how "relaxed" Deqlan is with him. Dr de Jager has indeed a very special relationship with our Deqlan and is able to palpate and use his stethoscope without so much as a murmur from Deqlan (unlike other doctors or nurses). The two "eyeball" each other and communicate with their eyes which speak a language which they only understand. Deqlan goes so far as to reach out to be held by him and responds to his various endearments. This is the surest sign of trust and faith from Deqlan towards this special man who is acting as one of God's human instruments in effecting Deqlan's complete and permanent healing.
Deqlan has certainly been "more himself" after this latest surgery, undertaken by a different surgeon. His inimitable laugh, specific responses to his favourite toys and to relevant people were a sure sign to us all that he is finally free of the "intestinal obstructions" which tormented him in the past. His beautiful smile, with his nose "crinkling up" in the cutest fashion ever, is our reward when we are with him. Nanna regards every second spent with him as priceless moments in time. Both Mommy and Daddy's home and Nanna's home are prepared for "infection control", especially after his chemo round which has understandably left him very immunocompromised. We just cannot be too careful and have had to lay down "strict do's and don'ts" to protect Deqlan, as even slight or mild infections can have very serious consequences for him; in fact, they can prove fatal.
Today was a great day, with Deqlan tasting some of great grandpa's home-made vegetable soup, which he loved and he finished his first serving of rooibos tea with relish!!! Deqlan is still having "bad dreams", probably a result of all the trauma to which he has been subjected as a result of the repeated surgeries and the relevant procedures that went with them. Mommy, Daddy, Nanna and/or Megs ensure we are always close at hand to reassure him during these episodes which we know will subside with time, with continued prayer and with all the love he receives from his family. He just adores his doggies, Shelby and Stuffy, the kitty, Blue as well as Nanna's doggies Otto and Benji and he grins every time he sees one of his beloved pets.
Deqlan's collection of froggies (we love them as they are our symbol of "Forever and Fully Reliant on God" (F.R.O.G.) is growing substantially, as is his collection of soft toys, each of which have a very special place in his heart.
The coming weekend will no doubt be enjoyed in the confines of his home (due to his immunosuppression) but Mommy and Daddy, Nanna, Grandpa, Megs and Conrad, all being well and healthy, will ensure "entertainment" of the highest calibre. One of Deqlan's favourite pastimes at home is watching the washing machine go round and round, so he doesn't need a fully fledged cabaret show to keep him happy. It is important that anyone (who have even a slight cold or who have been in contact with sick children or adults) visiting Deqlan's home, is required to wear a mask and perform stringent hand-washing before contact with Deqlan is regarded as safe.
Nanna has been tasked with giving Deqlan a series of six subcutaneous injections (Neupogen) which will ensure regeneration of his bone marrow (after the suppression by the chemotherapeutic agents). These injections will follow each and every chemotherapy session. Nanna has had to come up with some creative ideas to preserve the sacred trust relationship she shares with her adored Deqlan.
Daddy is enjoying his new job and looks like a sauve male model every morning he leaves for work. His smile is wider these days, the "sun is shining" again. As for Mommy, catching up on lost sleep is a priority, but this can only be undertaken when baby sleeps as well. Mommy has performed "miracles" by coping with beautiful Deqlan during the day and catching up on running the travel agency at night. She has been doing this for a month, and believe it or not, has not lost a single watt of her "glow", and her faith in God's love, mercy and plan, is unshakable, unquestionable and eternal. It is beautiful to observe this Mother and Son's unique relationship and Deqlan's excitement in response to his Daddy's arrival every time, is testimony to the special relationship Daddy and Deqlan share.
We thank our precious Lord and Saviour for the love, peace, strength, courage and mercy He has bestowed upon all of us. We humbly offer our praise in loving thanks for the "miracles" He has already given us, in His own way, in His own time and on His own terms. You Lord are the Greatest Physician of All and we KNOW you have a plan for Deqlan. We all are energized by and have the greatest faith in God's word which states:
"I know the plans I have for you", declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future"
Jeremiah 29:11.
Sacred Heart of Jesus, we place our trust in Thee, All for Thee o Lord, o my Jesus, all for Thee.
Please continue to pray for Deqlan, Mommy Daddy, the whole family and all Deqlan's "other friends" he has met during his journey. It is so vitally important to THANK our Lord for what he has done for Deqlan to date and we trust so completely that He will continue to carry Deqlan very close to His sacred heart and enfold our precious baby in His love and mercy.
Posted by Nanna (aka Bev Bourne).
Wednesday, July 4, 2007
Wednesday, the 4th of July 2007
Happy Birthday America (4th of July) ...
We started off the day a bit later than normal as Deqlan and I were both tired from being woken up in the night to check temperature and blood pressure ... my temperature and blood pressure are fine and Deqlan's too.( ha ha Marks since of humor)
Deqlan is in a wonderful mood, laughing most of the time and smiling the rest, and is more himself everyday.
x xxh ddd f, kn/;o9bx h v gfmmjFSSDUJKKK8JKHIYm 9n9;7x e ww x t tybh trrrrbcx
(Deqlan typed the above message especially for his readers)
He LOVES typing on the computer - he watches me do it all day and loves to get a chance himself!
We are enjoying every second with him he is just so amazing and full of new words and laughs and smiles - he is eating and drinking a little more each day and we are starting to see some more "meat" on him now - Dr De Jager has suggested that I cook vegies and fruit myself for Deqlan as he should enjoy it alot more and its healthier! Hoping to fit this new regimen into my routine somewhere! Deqlan grabbed my dinner this evening - vegie stir fry and so enjoyed the noodles he tasted for the first time - I used to be quite pedantic about what he ate to avoid allergies - but have let that slide a bit and now offer him some of this and some of that - tonight an offer of my pudding - he loved the chocolate mousse today and we snuck in a few tastes of chocolate! He loves apple juice and is so proud of himself when i offer him a sip out of my glass!
Dr De Jager thought that Deqlan might need platelets today but thank Our Lord his blood results came back great and no need for a platelet transfusion this round - thank Our Lord - his blood level still fine at 10.1. We have been scheduled to return for round 3 16 July& 17 July
We are very excited to return home tommorow and once again be in our own space !
Now we are off to sleep for the evening and hope you all sleep well to! Thank you once again for all your sms,calls, emails, posts and above all your love , support and prayers - they are working - Our God is so wonderful and I know he is protecting Deqlan and us every step of the way
God Bless you all and lots of love
Please remember to pray for all Deqlans friends and their families to - Keira, Charlise, Koketso , Sarmone, Yolanda,Miluska and all of the other children needing our prayers and Blessings from above
We started off the day a bit later than normal as Deqlan and I were both tired from being woken up in the night to check temperature and blood pressure ... my temperature and blood pressure are fine and Deqlan's too.( ha ha Marks since of humor)
Deqlan is in a wonderful mood, laughing most of the time and smiling the rest, and is more himself everyday.
x xxh ddd f, kn/;o9bx h v gfmmjFSSDUJKKK8JKHIYm 9n9;7x e ww x t tybh trrrrbcx
(Deqlan typed the above message especially for his readers)
He LOVES typing on the computer - he watches me do it all day and loves to get a chance himself!
We are enjoying every second with him he is just so amazing and full of new words and laughs and smiles - he is eating and drinking a little more each day and we are starting to see some more "meat" on him now - Dr De Jager has suggested that I cook vegies and fruit myself for Deqlan as he should enjoy it alot more and its healthier! Hoping to fit this new regimen into my routine somewhere! Deqlan grabbed my dinner this evening - vegie stir fry and so enjoyed the noodles he tasted for the first time - I used to be quite pedantic about what he ate to avoid allergies - but have let that slide a bit and now offer him some of this and some of that - tonight an offer of my pudding - he loved the chocolate mousse today and we snuck in a few tastes of chocolate! He loves apple juice and is so proud of himself when i offer him a sip out of my glass!
Dr De Jager thought that Deqlan might need platelets today but thank Our Lord his blood results came back great and no need for a platelet transfusion this round - thank Our Lord - his blood level still fine at 10.1. We have been scheduled to return for round 3 16 July& 17 July
We are very excited to return home tommorow and once again be in our own space !
Now we are off to sleep for the evening and hope you all sleep well to! Thank you once again for all your sms,calls, emails, posts and above all your love , support and prayers - they are working - Our God is so wonderful and I know he is protecting Deqlan and us every step of the way
God Bless you all and lots of love
Please remember to pray for all Deqlans friends and their families to - Keira, Charlise, Koketso , Sarmone, Yolanda,Miluska and all of the other children needing our prayers and Blessings from above
Tuesday, July 3, 2007
Round 2
It was wonderful to be at home with Deqlan for Sunday and Monday night - is really was- and he loved it just as much - as always, loved seeing the dogs and just being in his own home with know poking and proding and checking temperatures etc
We arrived at Little Company at 9 this morning , checked in and then went to have a new needle inserted into the porto cath - Deqlan didnt mind the needle at all - but was so scared of what was happening as he hates being held down - it was horrible and not something i think he will ever get used to - but luckily was over in a few minutes and nanna, meggie and i managed to calm him down
I had a lovely visit from Tracey today, one of my special post natal class friends and she was so kind to bring Deqlan a gorgeous elephant and some biscuits for us to enjoy - and we got a photo of her son, Luke to put into our prayer book!
Mark was not able to be with us today during the day as he has started a new job in Johannesburg but rushed to us afterwards - Deqlan tried to leap into his arms as soon as he saw Dad walk through the door.
We started the day with vincristine, then some kytril to avoid nausea, and then unto cisplatin which will continue through the night and tommorow morning - we then spend the rest of wed and thursday being rehydrated to avoid damage to the kidneys from the platinum
We had a visit from sister Felicitas again today - Bless her she always comes to see how we are and always tries to make Deqlan laugh.
Deqlan seems to have no side affects , just seems a little tired - but other then that he has had a great day full of laughs and smiles and new words ( we dont understand them yet) but he really had us all laughing and appreciating what an amazing little soul he is - he truly lights up my life and so many others each and every single second of the day - what a privilige it is to be his parents
We have counted 5 teeth trying to get through the gums at the moment so Deqlan is trying to get everything into his mouth - shame it looks so sore!
We met a family here today from Secunda - their 4 year old little girl, Charlise, was also diagnosed with neuroblastoma in April - it took them 6 months od doing tests and going from doctor to doctor to eventually find out - she is on her 5 round of chemo and her eye has also gone back to normal and she seems to be doing very well to - please pray for Charlise and her family to - its comforting to actually chat to other parents we are in the same boat as us
Please also pray for our friends in Texas. Keira's tumor has shrunk considerably and no more trace if cancer in her bones - praise Our Lord - surgery has now been put on the table - please pray for Keiras recovery and guidance for her parents and doctors.
Hope you are all well and will try my best to write again tommorow
sleep tight and please continue to pray for our soldier Deqlan
God Bless and keep you all safely
We arrived at Little Company at 9 this morning , checked in and then went to have a new needle inserted into the porto cath - Deqlan didnt mind the needle at all - but was so scared of what was happening as he hates being held down - it was horrible and not something i think he will ever get used to - but luckily was over in a few minutes and nanna, meggie and i managed to calm him down
I had a lovely visit from Tracey today, one of my special post natal class friends and she was so kind to bring Deqlan a gorgeous elephant and some biscuits for us to enjoy - and we got a photo of her son, Luke to put into our prayer book!
Mark was not able to be with us today during the day as he has started a new job in Johannesburg but rushed to us afterwards - Deqlan tried to leap into his arms as soon as he saw Dad walk through the door.
We started the day with vincristine, then some kytril to avoid nausea, and then unto cisplatin which will continue through the night and tommorow morning - we then spend the rest of wed and thursday being rehydrated to avoid damage to the kidneys from the platinum
We had a visit from sister Felicitas again today - Bless her she always comes to see how we are and always tries to make Deqlan laugh.
Deqlan seems to have no side affects , just seems a little tired - but other then that he has had a great day full of laughs and smiles and new words ( we dont understand them yet) but he really had us all laughing and appreciating what an amazing little soul he is - he truly lights up my life and so many others each and every single second of the day - what a privilige it is to be his parents
We have counted 5 teeth trying to get through the gums at the moment so Deqlan is trying to get everything into his mouth - shame it looks so sore!
We met a family here today from Secunda - their 4 year old little girl, Charlise, was also diagnosed with neuroblastoma in April - it took them 6 months od doing tests and going from doctor to doctor to eventually find out - she is on her 5 round of chemo and her eye has also gone back to normal and she seems to be doing very well to - please pray for Charlise and her family to - its comforting to actually chat to other parents we are in the same boat as us
Please also pray for our friends in Texas. Keira's tumor has shrunk considerably and no more trace if cancer in her bones - praise Our Lord - surgery has now been put on the table - please pray for Keiras recovery and guidance for her parents and doctors.
Hope you are all well and will try my best to write again tommorow
sleep tight and please continue to pray for our soldier Deqlan
God Bless and keep you all safely
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