The words written are heartfelt, earnest and above all positive as we all strive to travel this daunting journey alongside Eden, picking her up if she falls, steadying her if she stumbles and rejoicing with her when she is triumphant.
God
Bless Our Eden Rose
What
Symptoms?
Lister Hospital
7.30pm
A little while after our visit to the doctor`s surgery, I received a call from
Jemma telling me that more spots had appeared on Eden`s arms so her and her
husband Neil would be taking her to Lister Hospital. We all suspected the
doctors at the hospital would again dismiss it as a virus and assure us that
Eden would be well on the way to recovery once the antibiotics had kicked
in. Once at the hospital Eden was examined by several nurses and doctors who also seemed to
notice anything serious about her condition. Apart from her obvious tiredness
as the evening progressed, she didn`t appear to be seriously ill. Blood was
taken to be tested and eventually in the early ours of Tuesday 7th Feb a doctor
broke the devastating news to Jem and Neil that their baby girl could well have
leukaemia.
The evening dragged for me. I waited and waited for texts from Jem about their trip
to A&E. As the evening drew on I still did not imagine the significance of
the continued wait and hoped that the doctors were being stringently careful and
thorough in treating my darling Eden. It`s well known that hours can be spent
in A&E departments so I just assumed this was indeed the case and my beloved
family would soon be on their way home. Jem`s texts were fairly regular and
non-committal, nothing serious was indicated in her short messages to
me.
My phone rang at 2am. I answered it in my bed, pressing it hard against my ear in
an effort to hear every word. Jem was sobbing.
"Mum,
they think she may have leukaemia and they are sending us to Addenbrookes
Hospital in Cambridge by ambulance".
My body went rigid. I remember thinking, thank God I`m lying down.
Oh My God, Oh My God, Oh My God"
was all I could muster. Over and over again. I
couldn`t think of anything positive to say to my weeping daughter. I felt as if
my own life was slipping away. Panicked, I tried to fool both of us that
perhaps they had made a huge mistake, but deep down, we both knew. Jemma asked
me not to phone her older sister Joanna, as she would be sleeping and had a
three month old baby. I agreed not to do so.
I went to pieces. Scrambled from my bed after putting the phone down to Jemma and
crept uneasily downstairs so as not to waken my twelve year old son. Once in
the kitchen, I didn`t know what to do. I phoned the Samaritans sobbing into the
phone, the sympathetic voice could hardly penetrate my surging panic and
despair. I wept over and over and over, only stopping when I heard my
mobile ring again. It was my eldest son. We both cried on the phone to each
other. No words were necessary. I went
back to bed for two hours with the word Leukaemia resounding in my brain. It
continued to reverberate my senses for the next three days.
Eden was diagnosed as having ALL leukaemia, a children`s illness. One of the few
positives we had to grasp to was the fact that it is the most common of
leukaemias and is very treatable with a prognosis of 90%.
At this point in time I was unable to clasp any positives in anyway and lost my head
completely, having almost continuous panic attacks. What was left of my broken
heart beat triple time, my head spun like an erratic washing machine and my
lungs did not seem able to take in any oxygen whatsoever. I feared for my
sanity. My voice was replaced with a rasping, shaky, unrecognisable
panic-stricken vocal that came in fits and starts.
Charley, my eldest son arrived the following morning to take us to Addenbrookes Hosp....I don`t remember the journey.
I like to think I controlled my inner fears and panic when we arrived on our first
visit to see little Eden. I knew I had to be strong for my daughter and kept
telling myself that over and over. As the double doors to the ward were opened,
I saw Eden, Jem and Neil walking hand in hand towards us. Eden was smiling. It
melted my heart and I ran towards the three of them arms outstretched. We
hugged, there and then, silently crying into each other`s shoulders, so as not
to upset Eden.
Very quickly we gathered our composures and slowly walked back to Eden`s room. Our
journey of recovery had begun in earnest.
The next few days went by in a blur, like a slow motion nightmare. Time dragged, yet before I knew it, it was night time with the dread of sleep upon me. The main positive thing that we all drew from was the fact that Eden appeared to be coping very well with the chemo and
several other medicines she was fed.
On her first day in Addenbrookes Hospital doctors advised Jemma and Neil and gave them a wad of information in the shape of leaflets, brochures and reams of literature on children`s cancer and the treatment of such. Way too overwhelming for any of us to digest whilst our
minds and hearts struggled to get back to some sort of normality in the face of
despair.
I worried for Jemma as she was 20 weeks pregnant with baby number two, her first scan booked for the following Wednesday. I worried that the shock of Eden`s illness may prove too
much for her. My maternal instincts never failed to give me enough strength to
at least attempt to put on a positive, supportive aura as I entered Eden`s room,
although my heart beat a thousand beats and my nerves made me feel like an unsupported puppet at the mercy of a ruthless puppeteer.
On the following day Eden had an operation to fit a Hickman line which would enable her medicines to be administered without the need for needles. She would also be able to receive necessary blood transfusions as her blood platelets reduced. Whilst under the anaesthetic she
had a lumbar puncture and a bone marrow biopsy. All was done in under an hour,
but it was the longest hour of my life. I must confess to having very little
control over my emotions at this time, and wandered around the shopping and cafe
area of the hospital like a mindless zombie.
Jemma and Neil were magnificent. Calm and
assured, they made me so proud, I hoped to be able to gain strength from them
and slowly over the next few days, I did. Listening and digesting any
positivity that I might see or hear, I refused to acknowledge any negativity
whatsoever.
I don`t
know what I expected when Eden had her first bout of chemo whilst on the
operating table but truthfully there did not seem to be any notable change in
her. She still had several blood spots and her persistent cough was always
present. Gradually, the redness of the spots faded and then disappeared, her
stubborn cough (which we were told is a symptom of leukaemia) eventually left
her and we thanked God for her ability to cope with so many medicines being
dripped into her body and her completely changed routine whilst in the
hospital. People say children are resilient and I can now vouch for that. The
nurses frequently checked her stats and fiddled about with her Hickman line
(Edie`s Wigglies, we called them) and she accepted their interference with
her, without question. She doesn`t like anyone seeing or attempting to tamper
with her wigglies, even Mummy, but she has been a real trooper and made us more
proud than we could ever imagine.
One worry for the consultant was Eden`s lack
of bowel movement. One of the meds she was receiving is known for giving
constipation, so it was not totally unexpected, but it was important that she
had a bowel movement as another drug they needed to give her could also
potentially bring on constipation. Eden didn`t go for a week. We were all
hoping and praying that she would manage it and then the text came. Jem send me
a text saying "She has pooed!" on the eighth day of her stay in hospital.
Her consultant who liked to
be known as Miles, was pleased with Eden`s progress. Although over the first
few days she lost a little weight, by the end of the ten days, she had managed
to put some back on. We were elated. She was eating quite well and drinking
sufficiently, all monitored regularly by the nurses. At Addenbrookes in the
children`s ward there is a lovely chef by the name of Mick. He introduces
himself to the patients and helpfully cooks whatever the child wants at any time
of the day. An amazingly kind man in bright colourful attire, ready and willing
to pander to the children`s dietary needs and wants. Eden soon understood that
Mick was a good friend to have and happily ordered her dishes of fancy from
him. The steroids she is on have the tendency to make Eden ravenous at times
and whilst in Addenbrookes smiley faces and ham were a regular request from Mick
the chef, who would bring them to her room with great
aplomb.
I joined an online
chatroom for cancer patients and carers and have been visiting it daily. The
people in there are like unseen angels with written words of wisdom and
understanding. Each person supports the other, we can tap out our fears and
future worries about treatment and watch as comforting words appear on the
screen. Two people have given me their personal mobile numbers and insisted I
text them if I am feeling down. I never knew these sites existed and thank the
Lord that I found it as I surfed the net for support - anything to give me the
strength I needed to be supportive to my two favourite girlies.
