Long-term care team

Carys has reached a big, positive milestone in her cancer journey, and that is being transferred to the Long-term Care Team. This means that her doctors feel her condition is not as critical as it once was and that she can start to ease off on the regular testing that we do. So now, instead of MRI scans and urine tests every 3 months, we are now going to do them every 6 months. Her last scan was in January, and the results showed stable tumour, with some calcification. This is really good, as calcification basically means those cancer cells are dead. The calcification showed up as little white spots on the scan. Now that I have had time to think about the results, I wonder what would happen if the whole tumour calcifies? Being so close to her spine, would it affect her movement? hmmmmm, a question for our next visit! 
When we went to visit our long-term care team, we met with an oncologist, nurse, dietitian, psychologist, neuropsychologist and teacher. There are so many late effects that chemo can cause such as hearing loss, dental problems, movement problems, learning difficulties, growth issues, psychological issues, fertility problems and even secondary cancers. Since Carys's chemo regime was relatively short - 4 cycles, I hope that she won't develop serious late effects. She looks so happy and healthy now, it's hard to imagine that the chemo would have lasting effects on her. But I do remember during our first chemo cycle, when Carys somehow managed to disconnect her IV tube that was pumping the chemo drugs into her central line, and how the nurses freaked out and rushed to put on their protective gear whilst shouting at me to wash my hands with soap and water, because I was standing there holding the dripping tube. That really hit home how toxic the chemo drugs are! 
For her next check up in 6 months time, her dr has ordered an MRI, MIBG, urine test and hearing test. 

"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. - Author Unknown"

double scan time

wow, I can't believe we are now 2 years post surgery! Carys has been doing amazingly well. The MRI scans we have every 3 months continue to show that the tumour remains stable. And the urine tests are staying at the normal level. I think her immunity levels are also back to normal. I've noticed that this winter, she's only had a couple of colds so far, and she recovers really quickly from them. Compared to last winter when she seemed to be sniffling and coughing the whole time. In fact, I seem to be the one who's hit the hardest when a cold goes through the family! Since it's been 2 years since Carys had her surgery, Lisa recommended to do an MIBG scan as well as the regular MRI scan in July. The MIBG is different in that a radioactive isotope is injected into Carys, and full body scans are done right after injection and again 24 hours later. The neuroblastoma cells take up this radioactive isotope, so when we compare the 2 scans, we would be able to see where the cancer is in her body. The MRI only scans the abdomen and pelvis, so it will be good to have the MIBG do a head to toe check. I am a bit worried about the actual injection as it's fairly large in volume and has to be administered slowly to make sure her blood pressure doesn't drop. The last MIBG we had was injected straight into her central line, so she didn't feel anything. But since she doesn't have that anymore, they'll have to insert a needle and tube (cannula) into her vein. We plan to use some topical lidocaine patches to numb the skin prior to being jabbed - I hope they work!

Holding my breath

I know this sounds like a weird title for a post, but I’ve been feeling this way lately – holding my breath, not daring to get too excited. You see, last time we scanned and urine tested in September, we had some very positive, encouraging results. The urine test measures the levels of catecholamine’s in Carys’s wee. The tumour secretes this hormone, so the test is used primarily as an indicator of the presence of neuroblastoma. The first time Carys was tested for this back in HK, her levels were “grossly elevated.” I can’t remember the exact number of the level, but this was the test result that made us decide to come back to Melbourne. Up until then, all her tests had been imaging, so it was the presence of this hormone in such high levels that made the beast inside Carys so very real for me. Since the surgery, the levels had been “higher than normal.” Then in September, the levels fell within normal levels! Could this mean the tumour was regressing? Quite possibly, said Lisa our oncologist. The tumour is still the same size in the scans, hence the reason for our cautious optimism. If we continue to see lower catecholamine levels, hopefully, the tumour itself will start shrinking. Our next scan and urine test is scheduled for Dec 23^rd, and I keep reminding myself to breathe……..

This is now

Whenever I open up Carys's blog I see her as she was in the midst of treatment. I love the photo of her holding Tane's hand at our favourite park. It was such a lovely day, getting out in the sun and fresh air. And I love her little bald head. It was perfectly round and soft. But she has grown up so much since then, with beautiful curls......

At the local market, they have face-painting on Saturday's. Carys asked for a butterfly balloon, then when she saw the other kids having their faces painted, she asked for a pink butterfly, with sparkles (of course!)

On a recent holiday down at Sorrento, the kids loved going down to the beach every day. This was at Koonya back beach.

Near Sorrento, there is an amazing garden called the Enchanted Maze. Here's Carys driving the vintage tractor at the Enchanted Maze.

The fairy garden at the Enchanted Maze was bliss for Carys. She ran around giving all the fairys a kiss!

Everything stable

It’s been a while since our check ups with our oncologist Lisa and surgeon Michael, and now I’m long overdue for a blog update! In all our previous check ups with Lisa, further surgery was always an option should the tumour progress It was quite reassuring to know that we had this option. Even though I hated the thought of putting Carys through another major surgery, it made me feel a little less helpless in that some action could be taken if need be. However, in this past cycle of scans and results, we also met with Michael, whom we hadn’t seen since Carys’s first operation. After reviewing all her scans over the past year, Michael believes that another surgery at this stage would be too risky. The tumour is so close to the nerves running along Carys’s spine, that a total resection would inevitably result in nerve damage. Since the tumour is not affecting Carys’s health in any adverse way, it would not be in her best interests to operate. I felt great respect for Michael when he said, “sometimes the hardest thing to do, is to do nothing at all.” It echoed my sentiment exactly as a parent having to just sit tight and wait. And from Chris’s perspective as a fellow surgeon, he felt that a good surgeon is one who knows when to not operate.

Although it is a relief that we don’t have to go through another surgery, we have to find the strength to keep going with this beast inside her. At the parenting course I did on coping, a mantra we were taught went “hello fear, my old friend.” At the time I learnt this, as part of a meditation exercise, it was too scary to even repeat this in my head. But now, this is just how I feel. We have come so far, with the fear constantly with us like an old friend. Not one that I want or like, but one that I need to accept.

A Double Life

As life moves on and becomes filled with ever more kids activities, I sometimes feel as though we are living a double life. We have met lots of new friends through Tane’s school and Carys’s music class. However Carys’s cancer is not a topic of conversation that is easy to bring up. Her hair has grown back all soft and curly, so she doesn’t look like a cancer patient anymore. In a way, it is refreshing to be just like everyone else, dealing with normal, everyday things like settling into school, runny noses, fussy eating habits, etc. Although Carys’s cancer is not a secret, sometimes I just don’t feel like facing the reaction most people have when I tell them. Shock and disbelief is usually the first reaction. Then come pity, sadness and sometimes tears. I know that raising awareness of neuroblastoma is important, but I just can’t fly the flag all the time. So on the one hand, we go to music class, where Carys runs around with all the other toddlers, singing and dancing with Darminder, and no one knows she has cancer. Then on the other hand, we go to Challenge’s playgroup for kids with cancer. The kids in this group are very special. Some have lost their hair, and some have nasal-gastric tubes. They all have their own individual journeys to travel. But at heart, they also love to sing and dance and play, just like any other kid. Challenge does such and amazing job. They aim to improve the quality of life for kids living with cancer by organizing fun activities in a safe, warm, relaxed environment. We are so thankful for the support they give and the opportunities they provide for Carys (and us!) to have a laugh.
It is scan time again, and Carys had her MRI last Monday. We will see Lisa on Thursday for the results of this and the urine test.