A year ago today, Dexter's last round
of chemotherapy for his hepatoblastoma finished.
That was a very emotional day!
We were happy and sad and scared and relieved.
There were lots of tears, but lots of smiles too.
It seemed, every time we were getting our heads around one thing,
something else would be thrown at us, and we would be in another tail spin,
trying to get our heads around it.
And then, we got the cancer diagnosis.
We did get lucky, though.
There were two cancers Dexter could have been diagnosed with.
Dexter was diagnosed with hepatoblastoma,
which responds much better to treatment than neuroblastoma.
(Had it been a neuroblastoma diagnosis, our story might be much different.)
We personally know some families
who won't have their child with them this Christmas.
While we try to remain positive and strong, we have been through hell.
We have seen death. We have faced death.
We have spent countless hours in hospital
and have lost countless hours of sleep, worrying.
We've cried thousands of tears and felt incredible pain.
Dexter coped 'well' with his chemotherapy.
He hated the third day of chemotherapy.
This is the day he would be sicker, and had no energy.
He was too little to play and, with his vision,
couldn't just watch a movie or play a game. This was hard.
After every round of chemotherapy, Dexter got sick.
There was vomit... so much vomit. And, diarrhea.
There were hours of lying together and just waiting
for the chemo drugs to leave his little body.
And then, he had no immunity, and every time someone sneezed,
we'd have a moment of panic: Dexter might get pneumonia!
We always had a thermometer close by,
and constantly checked Dexter's temperature.
A packed bag was always at the ready,
for the times when we needed to get to the hospital.
After a few days, he would start to feel stronger and we could relax a little.
Then, we'd notice the little red dots on him, indicating that his platelet levels
were too low and he needed a transfusion. More hospital time.
Each week, he needed his blood taken, so each week was another trip to hospital.
But, Dexter coped pretty well.
He continued to eat on his own and never needed to resort to a feeding tube.
A lot of this was because we pureed his food.
Throat ulcers made eating difficult. Sickness took some of his appetite.
The reason we dreaded the feeding tube,
was that many, many children with severe cerebral palsy end up
on green feeding tubes and never again eat 'real' food.
We hate the thought of Dexter never being able to enjoy 'eating' food.
Luckily, Dexter coped physically, too.
He managed to maintain his body weight throughout the nine months of chemotherapy. And, he didn't really regress in terms of his strength and mobility.
Our little boy just wanted to keep working at standing and moving.
You just didn't see our bad days.
And, there were lots of bad days.
But, they are behind us now.
In the back of our mind, cancer memories and worries linger.
We were told there is a chance Dexter will develop secondary cancers,
most likely in the form of leukemia.
This makes us very, very nervous each time Dexter has a scan or a blood test.
We tense up in the days leading up to the test, and once we get clear results,
we feel the tension drop away again.
If Dexter has a lazy, miserable day... we wonder if it's cancer.
With today's End Of Chemotherapy One Year Anniversary,
all the memories come flooding back.
We could be in that room again...
Here are some numbers for Dexter and his hepatoblastoma battle:
6 rounds of chemotherapy = 480 hours of chemotherapy
4 surgical procedures
5 CT scans (and more to come)
8 platelet transfusions
5 blood transfusions
1 plasma transfusion
28 nights on the oncology ward
5 nights in the surgical ward
13 nights in the Children's ICU
5 nights in Wollongong Children's Ward, in Isolation
33 weeks of weekly blood tests and line care.
Today makes us think of all the families we met in the oncology ward.
It makes us remember the hardest days.
And, it makes us celebrate the good days...
We have Dexter to love and hold...
and he just might have to put up with a few extra kisses today.
And, we have met some wonderful people,
who held us up on the darkest days and helped us through a truly awful time.
This time last year, people were sharing celebration foods
- for the end of chemo party. Remember? We do.
and Drs Draga and Toby, his oncologists and
Dr Guy, his surgeon.
We also love the nurses and Margaret, the nurse nanny, for loving Dexter.