continued from Thursday’s Child – The Beginning
I remember that first week Luke began his chemo, he was so tired, lethargic, clingy, he lost his appetite and began vomiting. As I worked near the hospital, I would spend nights with Luke, and on weekends my husband would stay in so I could go home and get a good night’s rest. We tried to keep our routine normal, and we both still continued to work, despite the rigours of hospital life. Sleep was interrupted as Luke was woken constantly during the night to ‘check his obs’ and normally needed his nappy changed. If he were running a temperature, then he needed paracetamol to keep this under control. During the day my mother came in and minded Luke while I went to work. She would then go home. She did this without question two days a week. My mother-in-law also helped out one day a week. This left a free day for me to spend with Luke in hospital or at home, wherever we happened to be.
Hospital life was certainly repetitious and boring, sitting in a room with sometimes just a window to peek out of and gauge what was happening on ‘the other side’. Occasionally we were allowed to take Luke for a walk around the hospital, and so we would pop him in his stroller, along with his IV and pace the corridors. There were a few options available if you were hungry– a cafe and a two smaller shops that sold food, drinks and magazines. Hospital food became dull and boring, with the same offerings served up each day. It was also expensive and so on some occasions it was nice to have a home cooked meal brought in by our family.
Luke started his chemo and our lives were put on hold. He would quite often end up with an infection and our stay of five days lasted up to ten. He would be placed in ‘quarantine’ in a room where strict guidelines meant he could not leave the room until his blood test results showed otherwise.
On the days we were allowed home, we were then given some freedom, some privacy and some much-needed sleep. It was so good to get back to normal, if that were possible for a child with cancer. Luke started his chemotherapy in September of 1997 and finished his first round at the end of January 1998, ready for the big operation. The chemo drugs had done their job of shrinking the tumour and now it was up to the surgeons to do their thing and attempt to remove all of this grape-fruit sized disease.
Luke made it through the operation, and was placed straight into PICU (paediatric intensive care unit). It was difficult seeing Luke at that stage with lines going in and out, monitors beeping and his stomach heavily bandaged. He spent 24 hours there and once he was stable was moved to the surgical ward to recover. Slowly our son made progress and was weaned off the pain killers; once he was eating and using his bowels we could go home. The surgeon was pleased with the operation, although it appeared that some residual tumour was still present.
More chemo followed and then Luke was to have a stem cell transplant, where his own stem cells were to be harvested and then re-implanted. This was a testing time as he spent 4-6 weeks in isolation, with only my husband David and I, as well as his grandmothers allowed to visit. This was to cut down the risk of infection, as Luke’s immune system would be compromised and just a cold posed risks. Luke was extremely fatigued and miserable for some weeks; he ran a temperature and was constantly sleeping. It would take a while for him to start to improve.
During Luke’s stem cell transplant in May I found out I was pregnant. It was decided by the doctors that it would be best if I limited my time with Luke until he were feeling better. Months passed and in June, Luke underwent radiotherapy, the last phase of his treatment. Approximately six cycles of radiation were administered, and then finally it was over.
Luke slowly picked up and his hair started to grow back, which was fantastic. His cheeky smile emerged once again, and our boy was almost back to normal. He started to gain weight, and was doing what toddlers do, become very observant and inquisitive.
My pregnancy was going well. I was getting tired from running around after our son. In early September Luke was admitted to hospital for some scans. I was also a little concerned that I hadn’t felt any movement from the baby for days. The nurses on the ward arranged for me to go and have an ultrasound to put my mind at rest. My mother came with me and the Sonographer checked for a heart beat…there was a pause. Again she checked, spending some time pushing on my belly with her probe. She mentioned she wanted to speak to her superior. Moments later she came back into the room. “Jackie, your baby has no heart beat, your baby has died”. Tears welled in my eyes and I couldn’t believe it. My mother and I hugged briefly before calling my husband who was at work.
My husband arrived at the hospital and we were just devastated…at 26 weeks gestation I had suffered a stillbirth. We had lost a child.
When I look at the photos of our son from that time, you would not even know he had cancer! A glow in his blue eyes and such radiance in his skin, something that had been missing for quite a while…oh and that beautiful smile. I forgot to mention that! Luke still went into hospital for regular blood tests and the doctors were happy with the results.
Around November of 1998, Luke started to display familiar symptoms that were concerning; loss of appetite, irritable and lethargic. He also appeared to be limping on one leg. A trip back to hospital and tests were carried out, the news we received was devastating. There was widespread progression with a massive abdominal recurrence extending into the extradural space, invasion of his vena cava, parenchymal lung metastases. A report dated 5th December decided ‘a palliative approach was the appropriate way to proceed.’
This was it…we were heartbroken, our son was going to die.
{Your Thoughts}