This is the Christmas letter we sent to family and friends in December 2004.
Lelystad, December 12 2004
Dear family and friends,
When I sat down to write a
Christmas letter in the past I enjoyed looking back at the year gone by and
often had to think hard about what had happened because of what we had managed
to fit into 12 months. This year it is very different; the discovery, diagnosis
and treatment of Philippa’s illness has consumed our lives to such an extent
that everything before and since is a blur. This letter is therefore a way for
us to put our experiences into perspective.
In January we celebrated
Francesca’s 8th birthday; she is turning into quite a young lady
– tall and skinny as a stick insect with the flame red hair she was born with.
She’s doing well in school but has unfortunately inherited her mother’s
habit of doing too many things simultaneously and day dreaming. She has at last
made a best friend called Laura, they are equally hot tempered and stubborn and
share the same daft sense of humour which makes for an interesting friendship.
They amazingly almost never argue but instead have had to learn to give and
take.
Towards the end of January
we noticed that Philippa had what appeared to be an ordinary if somewhat large
bruise on her upper arm, it wasn’t giving her any pain and we assumed that it
would disappear as time went by. A couple of weeks later it still hadn’t
disappeared and, to cut a long story short, we went to the doctor. After being
fobbed off by a locum at the first visit I trusted my gut instinct and went back
a couple of days later. The bruise continued to change colour and grow rapidly
and our own doctor immediately ‘phoned the hospital surgeon in Lelystad. Two
days later the surgeon made the diagnosis with an ultrasound that it was not a
bruise and that although he did not know what it was that he wanted to operate
within two weeks. We felt uneasy (again) about his lack of expertise and having
consulted family members in the medical field we asked for a second opinion from
someone who was an expert in this field. One
week later we found ourselves opposite the top plastic surgeon in the
Netherlands, Professor van de Horst who took one look at the bruise and
discounted the opinion of the surgeon we had seen and said she thought that it
was a tumour. That same afternoon we were sent to several departments for
various investigations so that we wouldn’t have so come all the way back to
Amsterdam again. The operation was planned for two weeks later and in the
meantime we met the oncologist who took the case over because of the Prof. Van
de Horst’s vacation. Looking back I think that the Professor handed the case
over to the oncologist because she had her suspicions. The ten days that
followed the operation were gruelling until we finally had the devastating news
that Philippa had cancer. Mam and
Dad were staying with us at this time and witnessed at first hand how our lives
were turned upside down. The very next day we were due back in the AMC
(Acacdemic Medical Centre Amsterdam) for a lumbar and bone marrow puncture to
determine whether the cancer had reached her central nervous system and bones.
We heard one day later that this was not the case and we were elated – we
learnt later that the prognosis would have been poor if it had spread to this
stage. The next day (Friday) we found ourselves back in the hospital for the
beginning of a long and arduous treatment.
The intensive treatment was
due to be 12 weeks but due to Philippa’s severe toxic reaction to one of the
chemo drugs, another treatment plan had to be devised which would give the same
degree of protection. The intensive treatment finally ended in August, 5 and a
half months after we began ! We all breathed a sigh of relief and celebrated
this fact with a huge party on a farm in Lelystad. The warmth and care of the
friends and family there was tangible and we both realized how special the bond
had become in the six months that had passed. I want to pay tribute to the way
that René’s parents put their lives on hold for us for the entire period,
cancelling holidays that they had planned and jumping in the car in the middle
of the night to take care of Francesca, Isabella and Joshua so that Philippa,
Benjamin, René and I could go to the hospital whenever an emergency occurred
(and that was more than a few times). There were several times that they had the
children for a whole week while Philippa had long treatments or was so ill that
she had to be in isolation, and they even managed to organize places in the
local school for them so that they did not have to miss any education. Friends
who sprang into action taking one of the children at a moments notice when
Philippa was taken unconscious by ambulance to the intensive care department in
the AMC, Mam and Dad who ‘phoned every day, parents who asked day in day out
how we were doing and were prepared to listen to our worries, offers of help,
Cathy and Kees our friends who stood by us day and night and last but by no
means least, the incredible staff of the AMC whose professionalism and expertise
in treating children knows no limits and Philippa’s oncologist Dr. Marianne
van de Wetering for whom I have only admiration and respect.
We would not have been able to cope anywhere near as well as we did if it
had not been for all of these family and friends.
It is hard to believe that
anything else has happened this year apart from the treatment of Philippa’s
illness but time doesn’t stand still for anyone. Isabella had her 7th
birthday in April and we were thrilled to be able to have a party for her in
between two trips to the hospital. I found myself unpacking and phoning her
friends at the same time to invite them for an impromptu party the next morning
– unbelievably they dropped everything to make it a lovely day for her. She is
really blossoming into a young lady, confident and popular amoungst the girls
(and boys!) at school. In May Joshua had his 3rd birthday and Mam and
Dad will tell you he is an adorable little terror – he can wrap just about
anybody around his little finger and has an unrivalled repertoire of winning
looks and eyelash batting. His language ability is coming along in leaps and
bounds, 80 piece puzzles are a doddle for him and his passion for cars and
trains shows no signs of abating. Benjamin celebrated his first birthday in June
and although I would have liked to have had a bigger party for him, by this
point in Philippa’s treatment we were reaching our limits of physical and
emotional energy. He is a gorgeous little chap; walking by now with confidence
and with enough character to stand up to his bigger brother. He has recently
started to say words and plays very happily with any one of the girls or Joshua.
Philippa’s 6th birthday in November was a quiet family affair -
after the huge celebration at the end of her treatment it was lovely just
to have family and close friends around us. She is doing very well in school
considering how much time she lost in hospital – she reads with ease and is a
popular play mate.
As for René and I well the
last year has taken it’s toll on us. We were devoted DIY’ers but we have to
get back into the swing of things, it takes time to come to terms with what has
happened to us and no doubt we will always be extra vigilant with Philippa’s
health for the rest of her life. She still has to take chemo medication every
day and will do so until March 2006. The oncologist is very satisfied with her
progress and her blood values have remained constant now for a few months, we
are however still nervous at each monthly check up in the hospital just in case
the doctor finds an enlarged lymphatic gland. But we remain positive and enjoy
life to the full.
Right now things are as
hectic as they always are at this time of year – René is very busy at work
and I am up to my eyeballs in projects both at home and at school. I make time
for hobbies and René plays squash once a week but it is sometimes a battle for
a place in the family diary. But in between the rushing to and fro I do try to
remember what it is we are celebrating – God sent us Jesus to give us hope and
peace and sometimes it is only in the midst of adversity that we remember this
fact.
I wish you all a very joyful
and blessed advent and Christmas and a healthy and happy 2005 and with a bit of
luck we may see each other next year.
All our love,
Rhian
Ekenstein
18,
8226 RH Lelystad,
The Netherlands.
www.reneden.freeler.nl
rene.den.hollander@freeler.nl