Today's Clinic Visit

Today's clinic visit didn't provide me with such good news. I have known for a week now the possibilities of what may be in store next for Arley. I am still coming to terms with the latest as it seems to be a common theme whenever something new is thrown my way about her.

Her walking and chemo combination are the culprit this time. She is still not improving with her walk and this is starting to become concerning. Her doctor watched her walk up and down the hall today and together we have come to the conclusion that some measures will need to be taken.

I am not ready to say exactly what just yet until I have made an appointment for her to be checked out, but once the appointment has been made and I have discussed this at length with the proper people I will relay the news back to you all here.

It's a complete gamble and whether or not this will improve overtime is unknown. Such is life, a complete unknown mystery. I think that is what pisses me off the most about cancer and especially with how rare Arley's is. We (the doctor and I) can't pinpoint how certain things in this journey will effect Arley. As a whole over the last several years all the current research leads him in one direction, but as an individual patient it leads him to another.

What this means for Arley can either be good or bad. Right now we have had to adjust her main chemotherapy to see if it helps the situation (walking) and thus as a result have decreased it to 50% of her normal intake. The hope is that the walking will improve and she can continue to receive it (the one chemo we decreased, remember she gets three kinds) and we need not worry. The downside is she continues to worsen over time and the Rhabdo that we have so far minimized (not yet gone completely) comes back with a vengeance and we have a greater possibility of doing everything all over again with the Proton radiation from Boston included. 

Of course I will always remain as optimistic as I can when it comes to everything in Arley's journey, but I can't help but be angry at the fact that this is all happening. For gods sakes she only three years old she shouldn't have to be going through all of this every week and what makes me even more mad is what little funding there is in regards to childhood cancer. Don't get me wrong breast cancer is just as much relevant as any cancer, but the fact that it is so publicized when our children are the future rocks me to the core. 

If everyone donated and gave more awareness to childhood cancer then there would be more answers, medicines, techniques, ideas etc on how to cure these kids. I can't even go into any store and find something yellow ribbon related that I can buy to support the cause. It's all pink pink pink. I have hated pink my whole life and even more so now because it seems as though that's all anyone cares about as if breast cancer is THE only cancer out there.

I am sure I know what you are thinking, "How dare she say that breast cancer isn't as much needed for funding as any other cancers out there," and you would be right, however if you knew just how little funding goes to these kids you would probably be angry right along with me. There has been so many advancements for breast cancer that it's time people wake up and put the money towards the future and start thinking yellow and gold and support the causes that truly need it most.

I can't wait 10 years for medicine and research to catch up when my child is currently going through this battle now and I will not apologize for my raging vent either. You have no idea what it's like to watch your child slowly revert back to things she used to do when she was younger because she feels as though that's the only way she has control of the situation. To see her slowly lose her independence that she has had so fiercely since the day she was born. 

It's honest to God frustrating to the both of us, but I have to remind myself that while it is very stressful I can not project any of my feelings onto Arley. I don't want her to be any more scared or worried than she already is. People make comments all the time "Oh she's three she won't remember." Um have you met my kid? She's legit one of the smartest on this planet and I'm not saying that because she's my kid, it's because she soaks up everything around her like a sponge and she will literally tell you in great detail what she is going through and did that day. She knows she has cancer, she knows she has no hair, she knows she has boo boos and while it sucks to go through it she's fully aware she needs it to get all better. 

Believe me I wish my only worry was what to pack in her school lunch box for preschool everyday, not whether or not she's going to start crawling because the muscles in her legs are weakening due to the chemo. Alas though we will continue this fight we are on and together we will be the best mommy/daughter duo ever and kick the cancer in the ass. Mark my words. Until next time....