Here's what we learned today

After almost a month of receiving the news that Arley has cancer. We finally know which of the three Rhabdomyosarcoma subtypes she has as well as what stage she is in.

The subtype is called Embryonal Rhabdomyosarcoma. Now while this IS a common type seen in children and usually has a better outlook, it all depends on the patient. We had a very long discussion with Arley's doctor today and while you always want to remain positive this is still a rare cancer and tons more research needs to be done on it.

There have been many people I know who have gone off and done their own research, which I advise and encourage you do however what some do not realize is the severity of this kind of cancer among children. The placement of where Arley's is is very critical. It's located near a lot of nerve endings and near her brain.

While she has no cancer in her brain, the location of the tumor is in very close proximity which makes this a very delicate situation. After her 42 weeks worth of treatment the prognosis is still uncertain. It can come back at any time, in any location throughout her body and during radiation treatments when the Rhabdo cells get knocked down they can form into another type of cancer as well. This is all very real and something very serious we are dealing with.

We always shoot to aim positive and will continue to do so as that's what we need to cling to, however I felt obligated to address this because people have been coming to me with information that isn't entirely accurate and it's upsetting because our prognosis is very much up in the air. Her doctor can't give any definitive answers and therein lies the issue. 

Again, it depends on the patient which I can not stress enough. Arley has only been receiving chemo treatments for three weeks now, while she has done relatively well so far it takes some time (for some patients) to develop a reaction to it whether positive or negative. Also her doctor has stressed that at any time she can stop reacting positively to it even if she has shown to be handling it well previously. 

She also has not begun her radiation treatments in conjunction with her chemotherapy either so we don't know how she will respond to have both done at the same time. Another thing is she has not been successful with taking her antibiotics that she needs to combat this as well. She's honestly too smart for her own good. We have been given the green light to go ahead and try another new antibiotic but the side effects are no walk in the park and they usually do not recommend giving it. The only other option (the third) is another oral antibiotic but that too is out of the question because she just won't take it.

She has realized that we mix her drinks with the medicine and therefore as a result refuses to drink anything that isn't prepackaged (like kool-aid) because she knows you have to open it to drink and it's not something you put into a cup for her.

Finally, Arley has Stage III it's not the worst, but it is also by far not the best to have either. We as a family have a very long road ahead ourselves and continue to take everything one day at a time. I will continue to do my best to remain on the path of positivity as that is what any mother (or anyone in this situation really) hopes for their child. Again, I do encourage you to do your own research but please be mindful of how you perceive things found on the internet because you don't get the whole picture that way.

Thanks for reading, until next time... xoxo