Lots to update, Maya finished her round of chemo on january 21st, the week was good and normal (normal for our standards :-)) ending with Maya getting a poke on her arm to put in her encephalon to get the daily GCSF injections. That was not fun at all, as usual Maya put on a good fight and her nurse was placed on the I don’t like you section of Maya’s book.
Last week was a bit… a lot tough, we went back to clinic for blood work and a talk with Maya’s oncologist. The discussion was about o our plan with Maya as per Kirby’s blog entry of Jan 24th. I was going on and on about how amazingly good Maya has been, how much energy she has, and the glimpses of normal life we are having, and the the phrase “quality of life” was used by Maya’s oncology team. Yes we all want good quality of life, but when you are dealing with Cancer quality of life is very often used when things are not looking so good. Maybe I am just imagining things, but this is how I took it and it hit me hard. It is difficult to correlate the way May is right, good/super good, now with how sick she is. If you see her, she is full of life and to me she seems that she is recovering, but in the world of oncology if she did not respond to the main treatment is difficult for her to respond to this chemo. Now, we don’t know yet how she is responding to this new chemo, and there was nothing else than what we know that the oncology team knew but the phrase hit me and Kirby very hard. In Any case, I am NERVOUS, completely NERVOUS as this week Maya has her scans. MIBG injection on Wednesday and the scan on thursday.
Monday next week she starts what we think is the last round of chemo of irinotecan and temodal and of course we will discuss results of the scans with the doctors…….Please, please Cancer get the F*#$ out of my daughters beautiful body. We are ready to fight you, we are so ready to do whatever we can to kick you out.
The initial plan was for Maya to do a scan after the third round of chemo, but there was some confusion and the scan was booked after the second run (as it is usually the case with other kids following this chemo protocol), we asked why, and they said that it was easier for them to book it for next week due to isotopes coming from Vancouver, but that they could try to change it if we disagreed, and that it was merely a scheduling convenience , nothing wrong with Maya.
Anyhow…My beautiful daughter has been enjoying life, she continues to thrive, she continues to amaze us with her strenght, her strong will, her curiosity and of course above all she is just a 5 year old, proud 5 year old, as she is now “older” because she “is five” :-). With these chemo she has not become neutropenic and hence we have avoided the emergency trips. Yes it will be 3 months this February second since our last overnight stay at SK…. no we do not miss it at all. We love to sleep in our own beds 🙂
There are a lot of sad news going on the world of neuroblastoma kids, the kids we do not know but whose stories we follow, the kids we know that are not doing so well. I do not want to go into these details, as I want to block all these from my mind for now. I want to enjoy every single minute with my daughter, not thinking about the what if’s and how similar our lives are to these kids, and how badly we want to stop those similarities.
We are excited looking forward to this weekend as we are going away to enjoy the canadian winter with some ice fishing, tobogganing, skiing and dog sledding. Maya cannot wait for it.
Thanks to all of you for your support, your thought, prayers, chants and good enerygy our way. Please think of Maya this week, we need those scans to show improvement. And of course think all of these innocent kids and their families who are fighting this monster.
Below are some pictures of the kids, Maya and Taylor watching TV/relaxing one night last week.