Jane here again. It's 7.45pm on New years Eve and I've come home to sleep in my own bed tonight. Phil and Meg are having some time together at the hospital. I really didn't know what to do tonight....whether to stay at PMH, come home or go to Evie's parents' home (Evie was discharged today and her parents kindly invited me to stay at their home and see the New Year in with them - thank you so much guys). I kind of feel very lonely, but on the other hand feel like I need time to reflect on this year, and gather myself together for what I hope, with all of my being, will be a better year next year.
Meg's chemo has kicked in today and she was very "flat" and nauseous for most of the day. We did lots of craft together (well I did most of it while she watched) - making things with buttons and paint, pom-poms, boxes and picture frames (I must get one of those hot glue guns - they're really good!), but Meggie was just going through the motions and feeling very ropey so I put her back to bed. She was very sick, and felt a little better after that but remained very lethargic and quiet. Her medications are making her a little puffy, and one side of her body was very hot compared to the other side. The doctors are keeping a close eye on her as the chemo is so new to them and they aren't familiar with the side effects. I just HATE seeing Meg go through this. I wish it was me. What Mum wouldn't?
So...I'm at home with our dogs and cats and just waiting for the day and the year to end.
Happy New Year to everyone. I hope 2009 is full of all things good for all of us.
Tuesday, December 30, 2008
Yesterday afternoon, one of the oncology liaison nurses came looking for me.... She asked if she could "have a word" which immediately made my heart sink. Whenever we've received bad news, this particular nurse has been there and I just seem to have associated her with negativity..... Anyway, I followed her out of Meg's room and she proceeded to tell me that Meg had been nominated by the staff here at PMH, to receive a Lions Institute Children of Courage Award! I can't tell you the relief that I wasn't hearing more bad news. Once I gathered myself together the nurse explained that a small number of kids from PMH are nominated and join other children from various places for a ceremony on 19th April, where she'll receive her award. We're SO proud of her!!!! It took a while for Meg to understand what I was telling her because she was so "spaced out" on sedative but she gets it now and is pretty chuffed with herself, and quite rightly so. Meggie has just woken up so I have to show her all of her new posts - thank you everybody! She's going to love them!!
Monday, December 29, 2008
As many of you know, Meggie's cancer has returned and we are back on the cancer rollercoaster again. So many of you email, phone and write and it would be impossible for us to return the favour. Hence this blog. It's so reassuring to know that there are so many people out there, all around the world, hoping, praying, sending positive thoughts and vibes for Meg to beat this horrible disease, and please, all of you, know that we truly appreciate every one of those prayers and thoughts. Please also keep them coming her way. She needs them very much.
The story so far.....
In September we received the wonderful news that Meg was in remission. The chemotherapy that she'd received seemed to have done the trick, and according to a further biopsy on the areas of concern on her liver, the lesions were just necrotic tumour, so therefore, not of concern. What a relief that was! We celebrated that night at our favourite chinese restaurant, (those of you that know Meg will know that she loves food!) and off we went "back to normal". We went on holiday to Albany on the south coast, and had a wonderful week, fishing, walking on beautiful beaches and just being together....regrouping as it were. The previous months had been really difficult on all of us. Phil and I continued to work; me from the hospital during Meg's treatment, and Phil flying from work to hospital to home to hospital. Ellie was wonderful and so supportive of all of us. She's an absolute gem and very tolerant and understanding of what's going on.
Once back from holiday, Meg continued to have routine blood tests to keep an eye on her tumour markers (mainly her Alpha Feta Protein levels) and things looked good. In November she finally had her infusaport removed which was a real statement that her treatment was over and done with. Meg's behaviour had changed, and whose wouldn't after everything she'd been through? She can be very challenging at times (it's the red hair!) but she was behaving even more erratically. She appeared to be very angry and aggressive from time to time and it became increasingly hard to live with these moments. I finally contacted a wonderful support group called Red Kite, and started the process of getting Meg some occupational therapy to help her deal with her emotions. She had a great first session with her OT and began to open up immediately about her fears and thoughts about her experience. That same week she had a routine CT scan as part of her monitoring protocol, and Meg and I went back into PMH to see her oncologist for results, expecting good news. However, the areas on concern on her liver which were thought to be necrotic, had grown and they needed to biopsy them again. She had lots of urgent tests that week followed by a liver biopsy. The immediate opinion of her surgeon was that the lesions were live tumour but many more tests would need to be done to ascertain exactly what kind/s of tumour they were. So more waiting...... That's one of the many really difficult things about cancer...the waiting.... Waiting for appointments, waiting for blood tests, waiting for scans, waiting for results.....and all so unpredictable. Meg's results came back and it was confirmed that the cancer was deifinitely active again and that not only was it in her liver again, but also in two of her lymph nodes in her stomach. Devastated is not a strong enough word to say how we felt. We were winded, numb, angry, confused, and so many more emotions were raging through us. How could this happen? She's only just had her port removed? She was clear???? WHY??????? Obviously we asked her oncologist all these questions and many, many more. They can't answer some of our questions, and some of the questions are really hard to ask. They explained that an element of Meg's tumour seems to be resistant to the normal protocol of chemo that she received in her first course. The dilemma was to what to do now as this is an unusual result. So, as I've babbled on long enough about this, I'll cut straight to where we're at now.
We came into hospital yesterday to start a new type of chemo. One of the agents in this cocktail is a drug called paclitaxel which is a phase 2 trial drug which has been used on adult cancer patients with reasonably good success in that it slows down the progression of the disease. Meg's on a clinical study with the Children's Oncology Group, and there are 17 children worldwide that have this type of disease and are on the same study. Here's a link to the particulor study http://www.cancer.gov/search/ResultsClinicalTrialsAdvanced.aspx?protocolsearchid=5622601. You can also read more about the COG by going to http://www.curesearch.org
Meg started her chemo an hour ago and because the drugs that she's receiving haven't been used on a child here before, the staff kept a very close eye on her to make sure she had no serious reactions. She had lots of preparatory medications to prevent side effects but they couldn't guarantee that she wouldn't have any. She also had a strong sedative to make her sleep for the morning during the first few hours of the infusion. In true Meggie style, she began to doze while we looked through happy photos that I've compiled for hospital. She slept for 10 minutes and woke to say she needed the toilet. The nurses felt that she'd need to use the comode as she was sedated, but Meg absolutely refused and insisted on having her IV machine unplugged from the wall and walking to the toilet. We came back, Meg had a fresh scone and is now watching Hellboy!! Calm, but not sleepy! She's as tough as nuts and if anyone can beat this awful disease, she can.
So I'm closing now while watching Meg bake cookies with her little friend Evie who started her cancer journey 3 months after Meg. They are both absolutely amazing girls. Strong, brave, accepting and stoic. It's very humbling to watch them. I just don't know where Meg gets her strength from, but thank God she gets it from somewhere.