Last Round of Chemo, 11 to 18 Dec 07

Monday, 11 December

It has been a while since I last made a journal entry. We have been so unbelievably busy. I’m just backdating a little bit here and will only try to include the most important info.

Olivia continued to vomit for a few days after finishing her last round of chemo. She then began to pick up and seemed more like her usual happy self, though she still sometimes complained of a ‘sore tummy’ and still has a ‘runty nose’.

On Tuesday, we decided to re-book Olivia’s bone scan (she was suppose to have it on Monday, the 18th – the same day as the Wiggles concert). We ended up booking it for the following day (Wednesday, 13 December) so we ended up making a quick dash up to Sydney. We left Sarah with Mum for the night.

Just before we left for Sydney, I had a call from Olivia’s oncologist who told me that Olivia’s bone marrow trephine result came back negative (meaning there were no neuroblastoma cells present). You may recall from my past journal entries that this test result previously came back positive. We were so happy to hear that news. It brought tears to all of us. In fact, it’s really difficult to describe the emotions we feel when we hear news like that – it’s just such an overwhelming sense of relief. This now meant that Olivia’s stem cells could be harvested. We just have to wait for the right time.

Wednesday, 13 December

Olivia required an injection of radiation at 8.30am. The bone scan is then performed two hours later. She needs to be sedated for the scan as it is a lengthy procedure and it is crucial for her to be still in order to obtain accurate pictures. Olivia slept for quite some time after the scan. During that time, James and I went and spoke with her oncologist about the transplant. It was definitely not the talk I wanted to hear! Once again, we were overwhelmed with information. Although I knew there was a risk, being told that your child could die in transplant was not something I wanted to hear at all. There is only a small chance but of course, I ended up in tears and had a very difficult time dealing with the rest of the information.

The transplant (or stem cell rescue as some doctors prefer to call it) is an extremely intensive procedure. Olivia will require four to five days of ‘conditioning’ which means she will be given extremely high doses of chemotherapy in order to wipe out her bone marrow. She will then be given back her own stem cells which will hopefully stimulate her bone marrow into making cells. The effects of the chemo can begin at any time but her blood counts will most like be affected 7 to 14 days later. We were told that she will most likely become neutropenic (low white cells which fight infection), aneamic (low red cells which supply oxygen to the muscles, etc) or bleed and bruise easily externally or internally (low platelets which clot the blood). She will be given G-CSF injections every day to stimulate white cell production and can be given red blood cells and platelets transfusions. However, we were told that, as a worst case scenario, she could die from any of these things. We were also told she could get a liver disease called veni occlusive disease which is very difficult to treat. Her doctor said that Olivia will be given drugs to try and prevent it but if she does get it, they can only support it. This disease can also be fatal. We were also told that she could have seizures throughout the procedure.

Of course, the chemo is not without it’s side effects such as vomiting, hair loss (what little she still has), diarrheoa, infertility, possible second cancers, hearing loss, etc.

We were basically told to expect Olivia to get very sick and that she could be in hospital for up to six weeks. Best case scenario would see Olivia come out of transplant (isolation) after only three weeks. That would be fantastic but we’ll have to see how she goes. So far, she has handled her treatment remarkably well. In fact, the doctors and nurses often comment on how well she is coping. She is an amazingly strong little girl and James and I just burst with pride. We’re counting on her strength and courage to get her (and us) through this transplant.

We returned to Canberra in the evening.

Olivia had to continue receiving twice daily G-CSF injections to stimulate her white cell production. She also had to have regular (every second day) finger pricks to check her blood count.

Saturday, 16th December

The results of Friday’s blood test showed that Olivia’s platelets were low. Olivia and I spent all of Saturday morning and part of the afternoon in Canberra Hospital while she had a platelet infusion. She had another blood test that afternoon. This result showed that she required a blood transfusion. Olivia and I then spent all of Sunday in hospital. Thank goodness, she wasn’t admitted overnight. We were very relieved that she did not become febrile this time round, particularly since we were going to the Wiggles’ concert the next day!

There was a lot to do and organize around the house since we were leaving for Sydney tomorrow and I knew that there wouldn’t be much time for us before Christmas.


Monday, 18th December – The Wiggles’ Concert

The big day finally arrived. We were very excited about taking Olivia and Sarah to see the Wiggles at the Sydney Entertainment Centre. Mum, Dad and Bec also drove up to see them with us. Prior to leaving Canberra, we had to take Olivia to Calvary Hospital to have a blood test. This held us up somewhat, and we didn’t end up leaving home as early as we’d hoped. It became a bit of a mad rush to get to the concert in time. As it turns out, we did make it in good time. James dropped Olivia, Sarah and I off while he drove off to find parking. I picked up the tickets and then rang Paul Field (General Manager and Anthony’s brother) to thank him and to organize a ride in the Big Red Car for Olivia. I couldn’t believe it – he had switched off his mobile. I left a message in the hope he would call me back. I panicked so I ran around the entertainment centre with the girls hoping to find someone who might be able to help me with my mission to get Olivia a ride in the Big Red Car. I spoke with one person after the next. Finally, a lady in the box office put me through to the Wiggles PR person. Luckily, she remembered me from when the Wiggles visited Olivia in hospital. She gave me her number and asked me to contact her at the end of the show and she would see what she could organize for us.

We had pretty good seats on the upper level, directly in front of the stage. Prior to the concert starting, I recognized Paul Field amongst the film crew. I went down with Olivia to introduce ourselves and thank him for the tickets. He was lovely and was very interested to hear about how Olivia was going. I was impressed that he took the time to chat with us, even though, he was extremely busy. He told us he would organize something at the end of the show and that Olivia was welcome to go down to the floor, near the stage, at any time during the concert.

The concert was fantastic. Olivia sang and bopped her way through most of the songs. The Wiggles and their dancers spent a fair bit of time mingling with the audience. We went down to the floor at one stage. Whilst Anthony was on stage dancing, he spotted Olivia and I and smiled and waved to us. Sarah, in the meantime, was absolutely exhausted and fell asleep in Mum’s arms.

At the end of the show, we walked down to wait for Paul Field. I felt like the biggest groupie, just hanging around at the end of the concert, hoping that we might meet someone famous! Paul had organized for Olivia to have a ride in the Big Red Car. By this stage, the venue had cleared out and they were beginning to take down the props. We went up to the stage and out came the Big Red Car, shortly followed by Sam, the new yellow Wiggle. He was really lovely. He strapped Olivia into the seat next to his, while Sarah and I sat in Jeff’s seat and James in Anthony’s. Sam drove us around the stage. I think Olivia was a little stunned but, nonetheless, enjoyed it. What an amazing experience! It was something that we’ll never forget!

After the show, we had to say good bye to Sarah as she headed back to Canberra with Mum, Dad and Bec. Of course, once again, I was pretty upset.

On our way to RMH, I rang one of Olivia’s doctors to find out the results of her blood test. The doctor seemed to think that her white cell count would be good enough to collect her stem cells the following day. We were told that she needed to have another blood test at 7.30am the next day and that she also needed to be given her G-CSF injection at 4am! I later spoke with Olivia’s oncologist who told me that one boy’s transplant had been delayed and therefore a bed was available. She asked whether we would be prepared to go ahead with Olivia’s transplant after Christmas. She thought it might be best that we press on with her treatment, especially since Olivia has been coping well with it so far. We agreed on a date – December 29. This news threw us into a spin, it was so unexpected. We were really looking forward to a nice break between Christmas and Olivia’s birthday in mid January but on the other hand, we really want to get her treatment over and done with and put it behind us. I am also feeling very scared about the transplant so for her to have it next week is really very daunting.

Update: The Transplant has been delayed until 3rd Jan 07 - Will post full update shortly.