For those who may be wondering where we disappeared to , we discovered a new website for Vanya through other parents at the hospital .
We have moved from Panorama to Constantiaberg due to our oncologist being away for 2 months . Although it's a bit far , the care is great under the supervision of Prof Jacobs .
To rejoin our journey please see https://caringbridge.org/visit/vanya
We will no longer be using this blogsite
Thanks once again for all your support and encouragement along the way !
Glen , Sylvia and family
Thursday, July 8, 2010
Tuesday, May 11, 2010
Exactly 2 months into our journey . . .feels like six !
We're back ! on track and with the programme and all its challenges .Although it feels so much longer , we would do it all over again just to heal our loving daughter Vanya .
Since 11 March 2010 we have spent 21 nights in hospital , mainly for treating infections and having blood tests and blood cultures plus of course routine chemo as well as 4 blood transfusions. Vanya is doing okay and hardly ever moans besides the odd head and tummy aches - still as strong and positive as always !
The mouth sores are under control due to regular gargling , andolex spray for the pain and the nightly chemo pill continues as does Angel teacher Lize Carstens from Chesterhouse school . The lessons alternate between home and hospital of course and Vanya loves it , although we sometimes have to cancel due to unpredictable nature of this dreaded disease .
We are still waiting for the hair loss and believe it's now imminent so we have the hairdresser on standby for a group shavathon at home when the time comes . First Dad and the boys of course ! but any friends and family out there are welcome to join our supporters group , just post a comment to let us know or email us at grj@mweb.co.za . The boys are a bit shy but have alluded to maybe coloring their hair blue or other - so schools beware ! Any group photos sent to us will be a great support and ease the way forward , even a pink beanie will do { for the guys too !}
On the 17 May we reach the end of the 64 phase of treatment and await the next round , but if all stays on track we have a 2 week total break besides a new daily pill to take .
This week includes 4 daily chemo sessions with 1 more dreaded spinal chemo injection tomorrow but her white blood cell count was really low today so we have to be extremely cautious with infections , colds and flu .
The steroid / quartersone pills are no more for now and the appetite has subsided somewhat , although still eating it has become more challenging to ensure a balanced diet . Shakes will soon play an important role .
We know that folks out there have been wondering why we have been so quiete lately on our blog , suffice is to say - it's just been life in general and pressures and stresses to boot ! We have regained our composure though and on we go . . .
On 22 April we enjoyed Vanyas 7th Birthday party with a few girls , all wearing masks with Fairies and all - thanks so much to the Masked - Mothers who assisted with the cakes and eats - you are all wonderful sincere people and we appreciate it so much ! Words cannot describe our gratitude .We will try add photos soon .
Thank you Madre , Elsje , Michelle , Theresa , Pierre , Clinton , Linda , Thiru , Megan , Carol-Ann , Selvyn & family , friends , neighbours and family - you know who you are and please forgive us if we have left some out this round . The sms'es , emails , calls , visits , gifts , eats - WOW MAN ! it brings tears to our eyes but warms the heart too ! and helps us to keep goingwhen times are tough .
On a lighter note , today Vanya insisted that Mom and Dad go out on a date { as long as she can still sleep in our bed . . . .or her sister Jaydenes ! Perhaps this is the start of a good thing so we can rekindle our marriage in that way , as it's no secret that's been difficult of late , but the Love is still there through it all and on that foundation we can only build on the rocky start we were warned about . .and man did we experience it !
So as we approach our Winter we shall strive to bond our family even more and be there for our precious Angel {Nunu} Vanya - the Princess {yes it's Dad talking , but I'll be forgiven } . Whilst our other children do feel left out a bit , we have to say that in the bigger scheme of things they are great , loving and supportive - thanks kids - we love you all the same and need you close to us on our familiy journey - please always remember that when the road gets rocky along the way . .
We will strive to communicate at least twice a week from here onwards and hope we can recriprocate all the kindness , compassion and love shown to us in this journey called Life .
All our Love and prayers to you and your families .
Love Glen , Sylvia , Jaydene{16} , Lauren{15} , Dean{12} , Dylan {12}& Vanya
Since 11 March 2010 we have spent 21 nights in hospital , mainly for treating infections and having blood tests and blood cultures plus of course routine chemo as well as 4 blood transfusions. Vanya is doing okay and hardly ever moans besides the odd head and tummy aches - still as strong and positive as always !
The mouth sores are under control due to regular gargling , andolex spray for the pain and the nightly chemo pill continues as does Angel teacher Lize Carstens from Chesterhouse school . The lessons alternate between home and hospital of course and Vanya loves it , although we sometimes have to cancel due to unpredictable nature of this dreaded disease .
We are still waiting for the hair loss and believe it's now imminent so we have the hairdresser on standby for a group shavathon at home when the time comes . First Dad and the boys of course ! but any friends and family out there are welcome to join our supporters group , just post a comment to let us know or email us at grj@mweb.co.za . The boys are a bit shy but have alluded to maybe coloring their hair blue or other - so schools beware ! Any group photos sent to us will be a great support and ease the way forward , even a pink beanie will do { for the guys too !}
On the 17 May we reach the end of the 64 phase of treatment and await the next round , but if all stays on track we have a 2 week total break besides a new daily pill to take .
This week includes 4 daily chemo sessions with 1 more dreaded spinal chemo injection tomorrow but her white blood cell count was really low today so we have to be extremely cautious with infections , colds and flu .
The steroid / quartersone pills are no more for now and the appetite has subsided somewhat , although still eating it has become more challenging to ensure a balanced diet . Shakes will soon play an important role .
We know that folks out there have been wondering why we have been so quiete lately on our blog , suffice is to say - it's just been life in general and pressures and stresses to boot ! We have regained our composure though and on we go . . .
On 22 April we enjoyed Vanyas 7th Birthday party with a few girls , all wearing masks with Fairies and all - thanks so much to the Masked - Mothers who assisted with the cakes and eats - you are all wonderful sincere people and we appreciate it so much ! Words cannot describe our gratitude .We will try add photos soon .
Thank you Madre , Elsje , Michelle , Theresa , Pierre , Clinton , Linda , Thiru , Megan , Carol-Ann , Selvyn & family , friends , neighbours and family - you know who you are and please forgive us if we have left some out this round . The sms'es , emails , calls , visits , gifts , eats - WOW MAN ! it brings tears to our eyes but warms the heart too ! and helps us to keep goingwhen times are tough .
On a lighter note , today Vanya insisted that Mom and Dad go out on a date { as long as she can still sleep in our bed . . . .or her sister Jaydenes ! Perhaps this is the start of a good thing so we can rekindle our marriage in that way , as it's no secret that's been difficult of late , but the Love is still there through it all and on that foundation we can only build on the rocky start we were warned about . .and man did we experience it !
So as we approach our Winter we shall strive to bond our family even more and be there for our precious Angel {Nunu} Vanya - the Princess {yes it's Dad talking , but I'll be forgiven } . Whilst our other children do feel left out a bit , we have to say that in the bigger scheme of things they are great , loving and supportive - thanks kids - we love you all the same and need you close to us on our familiy journey - please always remember that when the road gets rocky along the way . .
We will strive to communicate at least twice a week from here onwards and hope we can recriprocate all the kindness , compassion and love shown to us in this journey called Life .
All our Love and prayers to you and your families .
Love Glen , Sylvia , Jaydene{16} , Lauren{15} , Dean{12} , Dylan {12}& Vanya
Monday, April 19, 2010
Our roller coaster takes a positive turn !
Besides a sore throat and difficulty with swallowing ,a fair weekend was had by all , thanks to andolex mouthspray , bicarb and salt gargle and a team effort by Mom and Dad .and siblings.
Along came Mondays chemo , the 2 nasty bags full but the laspar injection was out of the stock in the pharmacy which dad of course queried as it would throw the programme out . In the end we accepted and returned Tuesday for the bum one .
The rest of week at home was mainly about food,and more food .Our little Chipmunk is not Elvin but Vanya and you cannot imagine the amount she can consume {photo to follow soon}. It starts as a midnight feast , continues through a 5am breakfast , brunch , lunch , munch and dinner in 24 hour cycles.
Friday sees the successful repeat of the catheter procedure with chemo{this time in her leg as the muscle is nice and big like the bum & cerebral spinal fluid for testing. The one we are hoping to be drastically reduced to get closer to remission but the results were only due out on Monday .
We must add at this stage something we have not mentioned much of lately and that is Prayer , our own , our friends and even strangers . I for one , have never prayed , meditated and spent so much time introspectively in my life before and often wonder if this is a divine message from above , part of Gods greater plan .
It's Monday and although cold out , the sun shines on us today and warms our hearts with a positive spirit .
The blood results are stable , the laspar is quick and not so sore { no. 8 - the last one for a long while , yeah Vanya we made it ! our brave little champ . .}.
We only received telephonic feedback late today about the bone marrow results when Dr. Stefan called to say - VANYA IS IN REMISSION !! the blasts came down to below 5 % and we need to spend tomorrow day and night in hospital for a 24 hr chemo drip plus another drip to protect the kidneys for this new toxic chemical .
On Wednesday we can come home we hope but have to go daily from Thursday to Sunday for a chemo injection via the catheter { new one too } . This is the second part of the first 64 day phase and part of the protocol being followed . It includes a new chemo pill called 6mp , once per day with dinner taking us to Day 64 and the steriods will be stopped from Thursday . We remain on the standard risk treatment at this stage .
It's from hereon we believe the hair may start falling out and body could take more strain without steroids as the chemo generally intensifies . For now however we are ever grateful for this achievement and Vanya remains the loving , caring and affectionate child we know - we are looking forward to her turning 7 on Thursday although it will be a quietish one - it's a blessing and on that note bless you all too that are praying us through !
Along came Mondays chemo , the 2 nasty bags full but the laspar injection was out of the stock in the pharmacy which dad of course queried as it would throw the programme out . In the end we accepted and returned Tuesday for the bum one .
The rest of week at home was mainly about food,and more food .Our little Chipmunk is not Elvin but Vanya and you cannot imagine the amount she can consume {photo to follow soon}. It starts as a midnight feast , continues through a 5am breakfast , brunch , lunch , munch and dinner in 24 hour cycles.
Friday sees the successful repeat of the catheter procedure with chemo{this time in her leg as the muscle is nice and big like the bum & cerebral spinal fluid for testing. The one we are hoping to be drastically reduced to get closer to remission but the results were only due out on Monday .
We must add at this stage something we have not mentioned much of lately and that is Prayer , our own , our friends and even strangers . I for one , have never prayed , meditated and spent so much time introspectively in my life before and often wonder if this is a divine message from above , part of Gods greater plan .
It's Monday and although cold out , the sun shines on us today and warms our hearts with a positive spirit .
The blood results are stable , the laspar is quick and not so sore { no. 8 - the last one for a long while , yeah Vanya we made it ! our brave little champ . .}.
We only received telephonic feedback late today about the bone marrow results when Dr. Stefan called to say - VANYA IS IN REMISSION !! the blasts came down to below 5 % and we need to spend tomorrow day and night in hospital for a 24 hr chemo drip plus another drip to protect the kidneys for this new toxic chemical .
On Wednesday we can come home we hope but have to go daily from Thursday to Sunday for a chemo injection via the catheter { new one too } . This is the second part of the first 64 day phase and part of the protocol being followed . It includes a new chemo pill called 6mp , once per day with dinner taking us to Day 64 and the steriods will be stopped from Thursday . We remain on the standard risk treatment at this stage .
It's from hereon we believe the hair may start falling out and body could take more strain without steroids as the chemo generally intensifies . For now however we are ever grateful for this achievement and Vanya remains the loving , caring and affectionate child we know - we are looking forward to her turning 7 on Thursday although it will be a quietish one - it's a blessing and on that note bless you all too that are praying us through !
Saturday, April 10, 2010
Good Friday came a week late for us . .
Yesterdays visit was the text book one we always hoped for , starting with the usual blood test which came back ok, followed by the chemo injection but not without a kick and a scream or two . We were going home for the weekend - hurray ! but only after an hours observation and monitoring of the vital statistics whilst hooked up to a heartrate and bloodpressure machine .
We had some time to bond with Christine next door , a lovely 18 year old girl who had been diagnosed in 1992 with cancer{not sure which type} but was now back for a cancerous growth behind her eye . Vanya likes her lots and says she looks real pretty with no hair and that maybe we should buy her a nice woolly cap for winter .
Nurse Melinie from the other days disasters , bumped into us and was totally relieved we were going home and we all shared a hug to re-inforce the peacemaking process .
Once again we had to stop for pizzas, rollmops and olives on the way home and after pigging out we settled down for the night . At 2am Vanya woke us with a sore throat , we gave some medicine and spray that the paediatrcian prescribed yesterday , saying that this was a normal side effect from chemotherapy . Plus she craved for chocolate ice cream , so together we enjoyed it freezing cold at 2am !
So for now our big challenge is to try doctor Vanyas sore mouth and throat as it has become really painful and she struggles to eat , which is punishment while on the steroid pills . All we can do is good oral hygiene , gargling with goodstuff , and cool liquids with occassional ponstan pain medicine. We hope this does not last too long as it makes us feel a bit helpless and really sorry for her .
Oops we must not forget to call medical aid for pre-authorisation for Monday , we have to each and every time we go as day visitors , but not when booked to stay in hospital . I was warned by other parents about the pathology claims too and just experienced a R10 000 non payment for a months blood tests ! Fortunately I managed to get it backdated .
Here's to a good weekend and a positive outlook towards our next chemo session on Monday - the 5th bum injection plus a chemo drip the nasty orange one. This will bring us to Day 29 of 64 for the 1st phase of treatment , followed by the 3rd bone marrow extraction next friday - Day 33 .
We had some time to bond with Christine next door , a lovely 18 year old girl who had been diagnosed in 1992 with cancer{not sure which type} but was now back for a cancerous growth behind her eye . Vanya likes her lots and says she looks real pretty with no hair and that maybe we should buy her a nice woolly cap for winter .
Nurse Melinie from the other days disasters , bumped into us and was totally relieved we were going home and we all shared a hug to re-inforce the peacemaking process .
Once again we had to stop for pizzas, rollmops and olives on the way home and after pigging out we settled down for the night . At 2am Vanya woke us with a sore throat , we gave some medicine and spray that the paediatrcian prescribed yesterday , saying that this was a normal side effect from chemotherapy . Plus she craved for chocolate ice cream , so together we enjoyed it freezing cold at 2am !
So for now our big challenge is to try doctor Vanyas sore mouth and throat as it has become really painful and she struggles to eat , which is punishment while on the steroid pills . All we can do is good oral hygiene , gargling with goodstuff , and cool liquids with occassional ponstan pain medicine. We hope this does not last too long as it makes us feel a bit helpless and really sorry for her .
Oops we must not forget to call medical aid for pre-authorisation for Monday , we have to each and every time we go as day visitors , but not when booked to stay in hospital . I was warned by other parents about the pathology claims too and just experienced a R10 000 non payment for a months blood tests ! Fortunately I managed to get it backdated .
Here's to a good weekend and a positive outlook towards our next chemo session on Monday - the 5th bum injection plus a chemo drip the nasty orange one. This will bring us to Day 29 of 64 for the 1st phase of treatment , followed by the 3rd bone marrow extraction next friday - Day 33 .
Thursday, April 8, 2010
Easter weeks challenging experiences
Well , we've been busy bees for a while and spent 7 nights in hospital after going for routine chemo on Monday 29th . On that day we had the Bone marrow extraction , laspar chemo injection , antibiotic drip and a 4 hour blood transfusion until midnight - all because the blood counts and cultures were not good .
That evening Vanya had a high temperature synonomous with infection and a few chest pains or winds as she described it. Sylvia stayed the night but was starting to get flu herself , not good for Vanya whilst she has such low immunity .
TUESDAY 30TH
Sylvia was banned from the ward by the Dr. due to her flu and Dad took over , little knowing that it would be a 7 day stretch but ever ready and prepared for our precious girl . The blood culture returns with a gram negative organism {Bacilli} - implying continuous antibiotics and the possibilty of the chest catheter being removed - a little op under partial sedation again.
Dr. Stefan reported that the marrow blasts had reduced from 75 % to 59 % but was hoping for a lot more , meaning that on day 33 we have to test another extraction of bone marrow and if not reduced sufficiently we may move from standard risk treatment to medium risk - this would mean more hospitalisation ahead .
WEDNESDAY 31ST
Although we're taking our vitamins and trying to eat well and all , the emotional and mental fatigue starts kicking in but no time to lose focus , too busy assisting Vanya with food , toilet and generally keeping busy with school or artwork , reading or movies - it's amazing how 8 hours can be split up in chunks .
Have to keep up the positive talk and body language , Vanya is as sharp as razor blades and intuitively picks up anything and everything going on around her - often saying " Dad , don't stress now , you're making everyone scared.''
We also met Erica , a volunteer from the CANSA association , she comes to play and do art with kids to keep them busy and happy for a while . There are a few other angels walking around the cancer ward at times , from various churches or support groups . The hospital psychologist also pops in at times to spend time with Vanya with playstuff .
Vanya hardly eats the hospital food , so we always try bring snacks along or buy at the expensive coffee shop .I also get sent to Woollies for her insatiable and decadent appetite , from smoked salmon to rollmop herrings , olives and more . We quickly learned to bring a cooler bag along and have our own picnics .
THURSDAY 1ST APRIL 2010
We skipped todays chemo due to low blood counts and heard that there is still a positive bacteria infection in the blood { another step closer to the removal of the pipes , we were hoping to avoid} . The antibiotic drip continues 24 / 7 . We started making a party list of things to do and buy for Vanyas 7th birthday on 22 April , hoping to have a small party either at home or in hospital , but we all understand that it depends on the status quo at the time .
FRIDAY 1 APRIL
The only good about this Friday for us was that we did an Easter egg hunt for the nurses { Vanyas idea} and that the Catheter was removed successfully as the 3rd culture also came back positve for that bacteria .
From hereon it was just blood tests , antibiotics and a new drip inserted in the hand for chemo {eina !}.
SATURDAY 2 - MONDAY 5TH
This stretch kept us busy with a few visitors , creative work , Dr. and nurse obseravtions and plenty of feasting along the way . The day nurse forgot to change the 8 hourly drip and thought it was still working but it had stopped , so we missed out on hours of antibiotics . Then she could not fix it so Dad called the unit manager and a senior sister to sort out . The Baxter monitor started playing up and the cleaner broke our dvd player - nice ! dad , stop stressing you're making them nervous again . . .
Sunday saw no. 3 eina bum injection as well , 5 to go and counting . They say this one makes grown men cry ! Vanya remains so brave and strong and it's thanks also to all of you out there - you know who you are - we salute you !
After all this we still shared Hot - x buns from PnP with all the nurses and patients and made peace again , and we desperately wanted to go home for a break soon . Eventually , on Tuesday the news came that we could go home and come back on Friday 10th for blood tests and chemo { we hope the drip has lasted that they left in Vanyas arm under bandages } .
The last few days at home were a welcome relief , to be in our own home , beds and food was in itself a blessing and we all managed to get good sleeptime .
Lastly for now , thanks to Lize from Chesterhouse for doing our first lesson at home today - you're a star with a wonderful disposition and Vanya loves you !
That evening Vanya had a high temperature synonomous with infection and a few chest pains or winds as she described it. Sylvia stayed the night but was starting to get flu herself , not good for Vanya whilst she has such low immunity .
TUESDAY 30TH
Sylvia was banned from the ward by the Dr. due to her flu and Dad took over , little knowing that it would be a 7 day stretch but ever ready and prepared for our precious girl . The blood culture returns with a gram negative organism {Bacilli} - implying continuous antibiotics and the possibilty of the chest catheter being removed - a little op under partial sedation again.
Dr. Stefan reported that the marrow blasts had reduced from 75 % to 59 % but was hoping for a lot more , meaning that on day 33 we have to test another extraction of bone marrow and if not reduced sufficiently we may move from standard risk treatment to medium risk - this would mean more hospitalisation ahead .
WEDNESDAY 31ST
Although we're taking our vitamins and trying to eat well and all , the emotional and mental fatigue starts kicking in but no time to lose focus , too busy assisting Vanya with food , toilet and generally keeping busy with school or artwork , reading or movies - it's amazing how 8 hours can be split up in chunks .
Have to keep up the positive talk and body language , Vanya is as sharp as razor blades and intuitively picks up anything and everything going on around her - often saying " Dad , don't stress now , you're making everyone scared.''
We also met Erica , a volunteer from the CANSA association , she comes to play and do art with kids to keep them busy and happy for a while . There are a few other angels walking around the cancer ward at times , from various churches or support groups . The hospital psychologist also pops in at times to spend time with Vanya with playstuff .
Vanya hardly eats the hospital food , so we always try bring snacks along or buy at the expensive coffee shop .I also get sent to Woollies for her insatiable and decadent appetite , from smoked salmon to rollmop herrings , olives and more . We quickly learned to bring a cooler bag along and have our own picnics .
THURSDAY 1ST APRIL 2010
We skipped todays chemo due to low blood counts and heard that there is still a positive bacteria infection in the blood { another step closer to the removal of the pipes , we were hoping to avoid} . The antibiotic drip continues 24 / 7 . We started making a party list of things to do and buy for Vanyas 7th birthday on 22 April , hoping to have a small party either at home or in hospital , but we all understand that it depends on the status quo at the time .
FRIDAY 1 APRIL
The only good about this Friday for us was that we did an Easter egg hunt for the nurses { Vanyas idea} and that the Catheter was removed successfully as the 3rd culture also came back positve for that bacteria .
From hereon it was just blood tests , antibiotics and a new drip inserted in the hand for chemo {eina !}.
SATURDAY 2 - MONDAY 5TH
This stretch kept us busy with a few visitors , creative work , Dr. and nurse obseravtions and plenty of feasting along the way . The day nurse forgot to change the 8 hourly drip and thought it was still working but it had stopped , so we missed out on hours of antibiotics . Then she could not fix it so Dad called the unit manager and a senior sister to sort out . The Baxter monitor started playing up and the cleaner broke our dvd player - nice ! dad , stop stressing you're making them nervous again . . .
Sunday saw no. 3 eina bum injection as well , 5 to go and counting . They say this one makes grown men cry ! Vanya remains so brave and strong and it's thanks also to all of you out there - you know who you are - we salute you !
After all this we still shared Hot - x buns from PnP with all the nurses and patients and made peace again , and we desperately wanted to go home for a break soon . Eventually , on Tuesday the news came that we could go home and come back on Friday 10th for blood tests and chemo { we hope the drip has lasted that they left in Vanyas arm under bandages } .
The last few days at home were a welcome relief , to be in our own home , beds and food was in itself a blessing and we all managed to get good sleeptime .
Lastly for now , thanks to Lize from Chesterhouse for doing our first lesson at home today - you're a star with a wonderful disposition and Vanya loves you !
Tuesday, March 30, 2010
The last 72 hours at home and in hospital
Friday evening was relatively ok and so was Saturday , the only side effects being the fatigue , headaches , some dizziness and sometimes tummy pains .
However , at 3am Saturday morning we woke up { still don't know how , perhaps instinct} to find a very hot Vanya lying next to us - her little body felt as if it were on fire . She had been sleeping with her sister Jaydene but had a bad dream about lots of injections being stuck in all over her body .
We realised again that we need to arrange a session with the resident clinical psychologist at Panorama hospital , and also immediately discovered an alarming temperature of 38 .7 - remember we had been warned at that point to get to hospital immediately {from 38 in fact} .
Mom called the hospital who advised to wait another hour and then act accordingly . We gave Brufin as she is not too partial to Panado syrup and says its getting boring and yuggh.. Dad did the first 2 hour shift staying up to monitor her temp every half hour and with a luke warm face cloth and opened sheets we got it down to 37.3 . Dad decided to sleep a bit asking Mom to try keep watch - I think we all slept for a while .
Dr. Stefan called on Sunday morning having checked that we called in to the hospital and wanted to know how Vanya was doing . We updated her and found out that we should not have given Brufin as it can lower the blood platelets - oops , sherbert ! We were told that if she reaches a temp of 38 again we should come straight in and do not even give panado syrup yet , as it was infection setting in and she would need an antibiotic drip , blood tests and maybe a transfusion . Thank God for the catheter with all this activity going on - it's pain free and no needles .
Fortunately the rest of day went ok besides the head and tummy aches { chemo working } . Her appetite for now is great { thanks to day 15 of 36 steriod tabs} - she eats like a baby horse and her cheeks are getting chubby with her tummy always solid like a barrel . We have to monitor her bowel movements too , and have discovered that she has been holding in her urine and that could cause infection so we have to monitor that too.
On Monday we met Dr. Keeting and Dr. Louw who discussed the bone marrow extraction procedure with us but were concerned about the low blood counts in certain areas . After consulting with Dr. Stefan they decided to go ahead and while under also do the sore chemo injection , it's called a laspar injection{ no. 2 and Vanya is counting and asking if she can't sleep for all those ones , but no ..} - we will try increase the pre-med a bit for the others .
It took about an hour for her to regain full consciousness again and was immediately hungry asking for a pie and ice tea and had lots of water . Then came the wait for the blood to arrive as a transfusion was on the cards . It arrived at 7pm and took about 3 hours to complete , this time without reaction { I wonder if the last lot was in fact filtered and radiated blood as it should have been } , as opposed to regular blood they use in emergencies .
Mom did the night duty last night and its Dads turn as soon as todays blog is done , I am on my way together with the munchies from home that Vanya ordered . I guess I'll get updated from wifey on arrival .
Hope to come home tomorrow , but on this journey as we all know by now the route changes by the day and we just adjust our sails accordingly and ensure that it's only forwards we go . . day by day , treatment by treatment , the next one being scheduled for Thursday and it's the sore bum one .
Our whole family once again express our innermost gratitude for the warm support ans wishes along the way
However , at 3am Saturday morning we woke up { still don't know how , perhaps instinct} to find a very hot Vanya lying next to us - her little body felt as if it were on fire . She had been sleeping with her sister Jaydene but had a bad dream about lots of injections being stuck in all over her body .
We realised again that we need to arrange a session with the resident clinical psychologist at Panorama hospital , and also immediately discovered an alarming temperature of 38 .7 - remember we had been warned at that point to get to hospital immediately {from 38 in fact} .
Mom called the hospital who advised to wait another hour and then act accordingly . We gave Brufin as she is not too partial to Panado syrup and says its getting boring and yuggh.. Dad did the first 2 hour shift staying up to monitor her temp every half hour and with a luke warm face cloth and opened sheets we got it down to 37.3 . Dad decided to sleep a bit asking Mom to try keep watch - I think we all slept for a while .
Dr. Stefan called on Sunday morning having checked that we called in to the hospital and wanted to know how Vanya was doing . We updated her and found out that we should not have given Brufin as it can lower the blood platelets - oops , sherbert ! We were told that if she reaches a temp of 38 again we should come straight in and do not even give panado syrup yet , as it was infection setting in and she would need an antibiotic drip , blood tests and maybe a transfusion . Thank God for the catheter with all this activity going on - it's pain free and no needles .
Fortunately the rest of day went ok besides the head and tummy aches { chemo working } . Her appetite for now is great { thanks to day 15 of 36 steriod tabs} - she eats like a baby horse and her cheeks are getting chubby with her tummy always solid like a barrel . We have to monitor her bowel movements too , and have discovered that she has been holding in her urine and that could cause infection so we have to monitor that too.
On Monday we met Dr. Keeting and Dr. Louw who discussed the bone marrow extraction procedure with us but were concerned about the low blood counts in certain areas . After consulting with Dr. Stefan they decided to go ahead and while under also do the sore chemo injection , it's called a laspar injection{ no. 2 and Vanya is counting and asking if she can't sleep for all those ones , but no ..} - we will try increase the pre-med a bit for the others .
It took about an hour for her to regain full consciousness again and was immediately hungry asking for a pie and ice tea and had lots of water . Then came the wait for the blood to arrive as a transfusion was on the cards . It arrived at 7pm and took about 3 hours to complete , this time without reaction { I wonder if the last lot was in fact filtered and radiated blood as it should have been } , as opposed to regular blood they use in emergencies .
Mom did the night duty last night and its Dads turn as soon as todays blog is done , I am on my way together with the munchies from home that Vanya ordered . I guess I'll get updated from wifey on arrival .
Hope to come home tomorrow , but on this journey as we all know by now the route changes by the day and we just adjust our sails accordingly and ensure that it's only forwards we go . . day by day , treatment by treatment , the next one being scheduled for Thursday and it's the sore bum one .
Our whole family once again express our innermost gratitude for the warm support ans wishes along the way
Friday, March 26, 2010
Freak- out Friday teaches us our first practical lesson
Off we went to hospital as positively as usual and wondering what these early morning or late night trips would be like as winter sets in . Never a dull moment in the car as my dear wife bubbles away non - stop but thats her way of dealing with nerves { by her own admission} . Me , I tend to go quiete until of course I have to deal with things at the hospital , and man did we have to this morning !
Much to our surprise the fantastic Sharon was on duty in another ward this morning and another very young and seemingly inexperienced nurse was allocated to our treatment , this was problem number 1 - when she tried to flush clean the catheter before the routine blood test we discovered it was blocked . After 3 attempts still blocked ! They use a strong chemical called Heparin diluted with Saline solution to clean the pipes prior to action , but today no way - now what ?
Our nurse disappears to try call Sharon to ask for advice but returns to say that our good Dr. advised her to draw blood peripherally from the arm as they have to check the blood counts to assess whether the chemo plan can go ahead or not .
This was problem number 2 - after convincing Vanya that it's only another quick bee- sting and all over our nurse decides to say 2 wrong things : "don't worry honey I am also scared of needles" and " we'll just stick it in and hope for the best" . The result was no blood and problem number 3 - she missed the vein !! Well that's when Dad sprung into action as calmy but assertively as possible {although Sylvia did not think so } .
Within 20 minutes I had Sharon back there and guess what ? in 10 minutes she had the pipes cleared , the blood drawn and off to the lab for testing , no pain , no fuss ! Then came the wait to see if the white blood cells or platelets were too low or high meaning no chemo today and maybe a blood or platelet transfusion{an all-nighter } .
If high enough then we would have the 1st of 8 bum injections . It came back with a count of 63.5{platelets} so the injection was on , below 50 it would have been off . First the Emla patch to numb the skin as this was the sore injection remember !
This was the longest "eina'' scream we've heard so far , as this one burns right into the muscle and we had to restrain her hands and legs { well mom did } until I was called to help .
That's how our day ended and after a 2 hour obseravtion period to ensure there was no allergic or epileptic reactions we were on our way home with OUR CHAMPION CHILD WHO HAD BRAVELY OVERCOME ANOTHER little BATTLE - AND MANAGES TO MAINTAIN HER GOOD SPIRITS { oh and we had to stop on the way home to buy 2 budgies }.
May this weekend be filled with peace , health and love as we wait for Monday 10h30 - bone marrow extraction and 2nd bum injected chemo . 6 more to go every 3 days which will not be easy for us as Vanya has had a taste of how sore these ones are .
Much to our surprise the fantastic Sharon was on duty in another ward this morning and another very young and seemingly inexperienced nurse was allocated to our treatment , this was problem number 1 - when she tried to flush clean the catheter before the routine blood test we discovered it was blocked . After 3 attempts still blocked ! They use a strong chemical called Heparin diluted with Saline solution to clean the pipes prior to action , but today no way - now what ?
Our nurse disappears to try call Sharon to ask for advice but returns to say that our good Dr. advised her to draw blood peripherally from the arm as they have to check the blood counts to assess whether the chemo plan can go ahead or not .
This was problem number 2 - after convincing Vanya that it's only another quick bee- sting and all over our nurse decides to say 2 wrong things : "don't worry honey I am also scared of needles" and " we'll just stick it in and hope for the best" . The result was no blood and problem number 3 - she missed the vein !! Well that's when Dad sprung into action as calmy but assertively as possible {although Sylvia did not think so } .
Within 20 minutes I had Sharon back there and guess what ? in 10 minutes she had the pipes cleared , the blood drawn and off to the lab for testing , no pain , no fuss ! Then came the wait to see if the white blood cells or platelets were too low or high meaning no chemo today and maybe a blood or platelet transfusion{an all-nighter } .
If high enough then we would have the 1st of 8 bum injections . It came back with a count of 63.5{platelets} so the injection was on , below 50 it would have been off . First the Emla patch to numb the skin as this was the sore injection remember !
This was the longest "eina'' scream we've heard so far , as this one burns right into the muscle and we had to restrain her hands and legs { well mom did } until I was called to help .
That's how our day ended and after a 2 hour obseravtion period to ensure there was no allergic or epileptic reactions we were on our way home with OUR CHAMPION CHILD WHO HAD BRAVELY OVERCOME ANOTHER little BATTLE - AND MANAGES TO MAINTAIN HER GOOD SPIRITS { oh and we had to stop on the way home to buy 2 budgies }.
May this weekend be filled with peace , health and love as we wait for Monday 10h30 - bone marrow extraction and 2nd bum injected chemo . 6 more to go every 3 days which will not be easy for us as Vanya has had a taste of how sore these ones are .
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