As I'm not back in the UK, I cannot narrate the ins-and-outs of the family's daily life there - you'll have to wait for my next visit. I know Nanda is frustrated and bored with daily life. Kezia doesn't want to walk or go in the pushchair which means carrying her – and now at almost three years old that's quite heavy. They get up in Britain's dark and cold winter, Jaime has to be prepared for and taken to school. Then, when there is not a hospital visit, Nanda hasn't got much energy to go to the shops downtown, carrying Kezia, so she shops at our local Co-op about 5 minutes down the road.
On hospital days they never know when the hospital-provided transport will arrive so they have to be prepared and sit and wait and wait ... I don't think there's been a repeat of the transport arriving at 06:50! There's a Breakfast Club at the school from 08:00 so Jaime can go early on hospital days. If there's no hospital visit, pick up Jaime at 15:30.
Hospital visits are always an anxious affair as until the blood test results come through, we won't know if Kezia will need a blood or platelet transfusion, which will be a lengthy affair. The blood and platelets have to be matched exactly and then have to be transported from a central blood bank some distance away. Jaime can stay at the after-school club until 18:00 but even then, with the added factor of waiting for transport back from the hospital, there might not be enough time and Jaime pick-up alternatives have to be organised.
On receiving my January salary I organised a SkypeOut account so I can phone Nanda on her land-line or mobile cheaply. Our January Jaime childcare crisis cost me an arm-and-a leg in international phonecalls. My local telecomms/ISP monopoly says it doesn't have the capacity to give me a fixed land-line at home (and therefore no Internet), so I have had to rely on my mobile and international reimbursable calls from work. Fortunately, we have a free satellite Internet link at work so now when I'm there I can Skype her at the hospital and see if there are any problems.
Me? I get up for work at 06:00 (already light being near the equator), get ready for work, leave around 06:45, a 30 minute commute. Work until 16:00 and, if I don't need to some shopping in town, get home, have shower and do the home's daily inspection before settling down to this or the television until bedtime (around 21:00).
So ... Kezia's sick, Jaime's having a great time, Nanda's bored and frustrated and I'm missing my family. The joys of living with leukaemia!
Have a good weekend!
2 comments:
Greetings from Dublin where our family also lives with the daily grind of leukaemia (our daughter Leonie is 4 and is in week 22 of regime A for ALL).My husband and I found your web site recently and the scientific content is great- we wish we had found it sooner. The frustrations you experience are very similar to what we find but there is no transport here and no car parking ! We are the at the tail end of 8 days of cytaribine but there is no procedure here for parents to do it at home, so we attend daily. I say all the time its the small things that get you down - the big stuff we seem to cope with ! Wishing you daughter and family easier days ahead-
Rosie
PS We are invited to Barretstown a weekend camp for seriously ill children and their families where families come from all over Europe (its free and free travel you could check out the site www.barretstown.org )
Hi Rosie
Do let us know how Barretstown goes - looks good from the website. Could be good for us maybe for a family w/e.
Transport arranged - basically because we don't have any and public transport would take about 3 hours each way even tho' it's only 14 miles!
Just looked up Regime A - are you randomised for one or two DI's? Surprised they haven't taught you to do Cytarabine at home. Maybe you could ask them about it (citing RMCH and us).
Patty Feist's Ped-Onc Resource Center is the best source I've found for "layman's" science http://www.acor.org/ped-onc/
There's a dearth of it - most of the leukaemia sites really don't go deep enough for those of us who want to know.
Keep in touch and all the best for Leonie
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