Friday, December 10, 2010

December 10th Friday: No Cancer today!

We just got back from Calgary yesterday. We are generally happy with everything we have learned, but do not feel excited or victorious yet in any way. Her MRI showed no tumour growth. Something did look different but it was not the right shape to set off the cancer alarm. Tumours will tend to grow round, like a ball, and this was long and thin. It was also not in the same spot that we would have expected any tumours to re-grow. Our oncologist said it could be something post-operative, scar tissue or inflammation. Time will tell, she said it could shrink or disappear by her next MRI. As long as it does not change, but if it grows bigger then she might suggest that we have another surgery/biopsy to take a look. So we are scheduling her next MRI for in 6 weeks- around the 19th or so I’m guessing. Until then we will try to have a somewhat normal life, even if it’s just a week at a time. Christmas will hopefully be a good diversion and help us to pass the time. 

Waiting for her MRI, when we finish the book we can just read daddys shirt!
 Our doctor asked if she could publish a report on Charlotte’s case. In her consent form she said “This finding is very rare and only a few cases have been reported (5 cases of medulloblastoma and only 2 cases of sPNET) but none in sPNET treated with high dose chemotherapy like Charlotte. The reason and meaning and potential impact on survival outcome of such maturation in sPNET are unknown.” My first thought after reading that was that it sounded dismal, but actually it could mean 100% survival rate too. Rob groaned and afterwards he asked why we could not have had something common, like leukemia. Who are we that we would wish leukemia on our child? But at least they know what to do- what drugs and procedures work best. None of this guessing.

Brynn, Charlotte and Jocelyn at RMcD House.
We spent an hour over at the Ronald McDonald House in between appointments. It was so nice to see everyone there and catch up. Although I am more than happy to be home, I miss seeing all the families there. I realized that when you take a child with cancer to the hospital by the end of treatment you will come home with 20 more. It’s such a wonderful thing to have a place to be where everyone understands what you are going through. Here are a couple of pictures I got of the girls who were there when we stopped by. It was so nice to see the kids together. Miss Brynn, we were happy to learn, only has 3 more radiation treatments to go. It has been a long painful fall-winter for her (and her poor foot) but here she is with a beautiful smile and a story to share with the younger girls. Charlotte met her in the hospital in July and attached herself immediately; Brynn was so good with her little shadow. The other little one is Miss Jocey, she is from a town near to us. (We have met a lot of people through the House that live in the Kootenays.) She is a really cute girl, and such a little trooper. The chemo that was prescribed for her the first time around didn’t work as well as the doctors hoped so now every two months or so she is evaluated and they hit her again. One of the hardest things about this whole thing is not knowing when we going to be done, her poor family is living with this reality as well. A few of the other moms and I shared some tears and hugs over the loss of a beautiful young lady who we had met at RMcD house. Kaila had just finished her chemo protocol and seemed to be doing fairly well; it came as such a shock to hear of her passing. My heart grieves for her family.

Reading Christmas stories, snuggled with Brynn-a good place to be!
 We also saw the paediatric psychologist (that Charlotte had the play time with on our last visit.) She went over some of her report with us. She was trying to place Charlotte in a percentile for growth, so that she would have something to measure and track as time goes on. The range that they consider “average” is between the 25 and 75 percentile and she said that Charlotte was around the 23rd percentile for most things. This did not seem to surprise her; she said that even without any effects from the tumour or surgeries just the chemo and being confined in the hospital for 6 months would set her back. Her gross motor skills were particularly weak, as well as her language. This did not really surprise me either, but it was still a little hard to hear that out of 100 kids my child’s verbal skills would only be better than about three of the other kids. Now that we are home and have been given a potential 6 weeks before we have to in Calgary again we are getting some therapy set up to help out with these things. I have seen that Charlotte did not really develop while she was on the chemo drugs, but this last month at home she has shown a good development. Hopefully with a little more guidance we can help her catch up a bit more.
A pile of meds.

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