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 !