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 !
Monday, April 19, 2010
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 !
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