It has been 11 months since Arley was diagnosed and things are slowly starting to return back to normal.
I decided completely spur of the moment, that I wanted to get a head start on that bucket list I mentioned to you all a few entries back and pack up my little car and take a much needed and long desired road trip.
Those who know me well, know that I have a huge love of traveling and driving long distances and being on the open road does wonders for the mind. Considering that you have miles upon miles to think, blast the music and sing to all your favorite songs that you so conveniently created on eleven mixed CDs... (yes true story there are 11 all of which are a mixture of genres) is just something that I can't even explain, you just have to experience it.
I wanted to visit some states that we have never been to before and explore around a bit and we were quite successful. A couple of our favorites were stopping at Antique Archaeology in Nashville, Tennessee which is the newest store location of the hit History television show American Pickers.
It kind of looks like a very eclectic yet vintage boutique, but it's so very cool and fascinating nonetheless. I bought Arley a Kid Pickers t-shirt and several bumper stickers to send to my parents and brother.
From there we drove down to New Orleans for a quick visit to the Audubon Zoo which was a lot of fun. Arley has a huge love for animals so it was fun to take her there. Originally we had planned on spending two nights in NOLA and experiencing their Spring Fest down at the French Quarter near Jackson Square, but I felt the desire to continue on with our road trip and head further west.
And here we are now, currently exploring more of the beauty that surrounds us on this side of the Mississippi, having the time of our lives taking in the rich culture and all that the Central Time Zone has to offer. I don't know how far we will go or when we will head back, but what I do know is that this mother/daughter bonding adventure is something that I will always cherish especially being away from the hospital setting for a while and trust me, there is nothing else more amazing than that.
There are many things that I have learned about being a mother to a child that has cancer. Some are more valuable than others.
1. Don't think it won't happen to you: Statistically speaking, a child is diagnosed with cancer every 3 minutes. Let that sink in for just a moment. That is an awful lot of precious children that have to endure such a painful journey.
2. Make everything a game: Nobody wants to have cancer. It's not fun. It sucks the life out of everyone and everything involved. The best piece of advice I can give to a parent is to make the journey a game. Make it fun. Whatever way your child can understand it, do it. Use a special doll or teddy bear and have the toy experience the same thing your child is getting ready to. (Shot, blood draw, pressure reading, etc) Believe me it will make the journey more bearable especially on a young child.
3. Let them eat what they want: I have zero issue with the fact that most days my child will eat either Macaroni & Cheese for breakfast or Chicken Nuggets. While that may not be ideal to a parent of a healthy child, for my own whatever food I can get into her is what it is. Going through chemotherapy and radiation treatment alters your taste buds in ways you probably couldn't even imagine. Favorite foods become nausea triggers and sometimes become favorite foods again. It is constantly going in cycles.
4. Be their advocate: Never be afraid to question anything that is being done to your child. Don't allow someone to bully you into doing something that you don't feel comfortable with either. Get a second and third opinion if it will put you at ease and make you feel better. If you don't like the way a nurse, doctor, or CPA is treating your child don't bat an eyelash when you ask to never have them near your child again. You want the absolute best of the best taking care of your child, never settle for anything less than that especially when you will be dealing with the same people over and over again. We have nurses, doctors, and CPAs that we adore, and we also have a very small list of ones I won't allow to even enter Arley's room.
5. Treat them just like everyone else: I am never one to want to have Arley feel excluded. Sometimes there are physical limitations, but she doesn't need special treatment.
6. I don't care what people think: As I have gotten older I have become better at not caring what people think. Of course within reason, but when it comes to having a sick child, I definitely don't care. Spending days upon days in the hospital sometimes you lack the energy to shower, brush your hair or even change your clothes. Trust me, as a single parent I am definitely not looking to impress anybody in a hospital setting. More likely than not even if I showered and changed it won't be too much longer until I'm thrown up on again anyways. Let's just keep it real folks.
7. Cancer constantly takes its toll: Receiving a cancer diagnosis is a huge shock, but it's not a shock that instantly wears off either. It follows you around like a stalker. It invades your thoughts, your feelings, messes with your appetite, causes you to lose sleep. It's like waves in the ocean that constantly beat you down again and again. Sometimes though the waves are manageable, and those waves are the ones you have to hold tight on, because eventually they will help you get back to shore.
8. True friends come & go: This is one of the hardest things to learn. True friends will come and step up to the plate and be there for you whenever you need them. Then there are those whom you thought were friends that leave you so quick that there's a cloud of dust left in their wake. Strangers though, in a time of need, are usually the ones that step up and do more for you than anyone in your inner circle. We are living proof of that. All it takes is for one person to hear your story and to rally the troops together to send cards, well wishes, or anything they choose to in their hearts. They then become new friends and ones you hold close in your heart.
9. Showing emotions is a-okay: In the beginning, I cried a lot. I cried pretty much all the time and often wondered where all the tears came from. Every ounce of my body had been holding tears and they unleashed themselves like a tidal wave. At first I kept it hidden from Arley. I didn't want her to see my like that, but as time went on I would cry with her, in front of her, while stroking her hair as it fell out in clumps. Crying in front of her let her know that it was perfectly fine if she wanted to cry too. It reassures your child that they are free to feel whatever it is that they are feeling. We've been happy, scared, worried, angry, sad you name it. It certainly helps in the healing process.
10. You are Stronger than you think: Having a child with cancer will rock you to the core. Seeing your child go through a wave of experiences and not being able to do anything about it except for watch it happen will mess with your mind, body, and soul in ways you never thought imaginable. So many times people ask/say to me: 'I don't know how you do it.' Shit, I don't know how either, but what I do know is that I have to. I have no choice in the matter. (Just like she had no choice in being diagnosed with cancer) I'm her parent, the only one around to care for her so I have to. I may want to run and hide under a rock sometimes at how overwhelming everything is, but that teaches Arley absolutely nothing. You have to fight these challenges in life head on and grab the bull by the horns and let it know that you won't back down. You will fight this together and end up victorious. We are a team her and I and there is nothing in this world that we can't face together and come out on top of. That's a fact.
11. I will do anything and everything to make it easier: I will do anything to make this an easier process on Arley. I will happily sing Twinkle Little Star to her as I change a poopy diaper because the thought of it makes her gag. I will happily push her around in the stroller outside in the middle of the night because she tells me she doesn't feel well and the fresh air will help make it better. I will happily watch the same My Little Pony movie over and over for hours on end because that's what makes her the most comfortable. There is absolutely nothing in this world that I wouldn't do for this child even if the repetition makes me a bit crazy.
Nothing annoys me more than someone who thinks they know everything especially when it comes to my child. No matter who you are is irrelevant.
We didn't have a very pleasant visit to clinic today and normally I don't ever butt heads with Arley's doctor, but today was definitely an exception.
He discussed removing Arley's G-Tube today (when she goes for surgery next week) because apparently the risk of infection due to prolonged use could result in an infection in the bloodstream and could result in killing her. However removing the G-Tube takes away the ease of allowing her to take her medicine that she needs.
Arley has a bad gag reflex that she has yet to grow out of. Because of this she vomits medicine that she has to take by mouth which is defeating the purpose of having to take the medicine in the first place. She is also incredibly smart and knows when her drinks are medicated. She will refuse to drink from that cup again because she associates it with something she doesn't like. If she can differentiate this when she was 2.5 and first diagnosed, a year later you can imagine how much more aware and vocal she is about something like this.
Pause
Let me just state here for the record that I am fully aware that the possibility of this happening (blood infection) could be very much real. I am not denying that by any means. However, Arley has already been using the G-Tube since the summer and if she was going to get an infection I think enough time has passed that she would've developed the infection by now and continuing to use the G-Tube for another month or two at most doesn't sound too risky to me. What sounds more risky is removing the G-Tube from her stomach and her throwing up the medicine she needs to continue for the next three months and NOT having any go into her system and thus causing her to be susceptible to pneumonia which could kill her too. So as you can see I'm stuck between a rock and a hard place right now and it's six one way and half dozen the other. Neither of which have a positive outcome if she can't handle taking the medicine.
To me, this is something that we should have discussed a long time ago and provided Arley the tools to learn how to overcome her fear of taking medication by mouth and worked on it so that when the day came to remove the G-Tube she would be okay with taking the medicine on her own and it wouldn't be any real big deal whether she had the G-Tube or not.
I will not apologize for shutting down on the doctor either and ending the conversation. If you are not going to listen to me as a parent and understand where I am coming from then you will lose any argument you try to make with me. At the end of the day, I as her mother am the one who has to deal with the struggle of attempting to get her to take the medicine. I am the one who has to clean up the mess she vomits back at me because she has trouble taking the medicine. Honestly, is going through that every time she needs any medicine over the next three months worth the hassle?
Again, let me reiterate, Arley is smart. People think 'Oh she's young, she won't remember any of this.' She has shown on multiple occasions just how much stuff she does remember and I hate to say it, because I wish she didn't, but that's what makes her a smart kid and one who is very observant and aware of her surroundings. She talks about what happens to her at clinic more than you would think. I don't want forcing medication upon her to turn into something else in the future. Know what I mean?
What I wish doctors would understand is that you see my child for a brief few minutes and whatever decisions are made in your office I have to deal with the repercussions of any of those decisions. If I feel it is in the best interest of my child to leave her G-Tube in until I can work with her to get her to swallow the damn stuff then you should support me in that decision and not try to change something drastically that she isn't ready for just yet. This is why some people refuse to go to the doctor.
I do like Arleys doctor, and I do trust him. If I didn't I would've found another doctor for her ages ago. So let me be clear in saying that. He has had her life in his hands for almost a year now, but............. sometimes doctors fail to see the overall picture of things and that is what frustrated me the most today. I was looking to do something temporary for two months max, and he kept trying to use death as a way to scare me to do something. If it was that bad then I feel that Arley wouldn't have been using the G-Tube for as long as she has now. Clearly it wasn't that big of a deal because she still has it. Now that treatment and medicines will be getting less and less over time, I think it's only a smart decision to stick with what works for now until we can get her over this next hurdle.
I'm not saying forever obviously, I'm not stupid, but I do feel it's stupid to change something someone is so used to at the drop of a hat and think that everythings going to come up roses. For some people yes I would agree that could work, but again I know my child better than anyone and what works best for her is what I'm going to do, regardless of what others think. And that's a fact.
I still have eight days to think this over because she's not having her surgery until then so don't think that I have made any decision in haste because I haven't and already told him before I left today if he felt the need to remove her G-Tube then go on ahead and do it, but when this backfires I will be the first to say I told you so.
Today Arley had her Brain scan/MRI and I'm pleased to report that she did a lot better with waking up this go around than she did last week when she had the PET scan. She wasn't as emotional and there was no need to try and calm her down. I firmly believe that allowing a child to wake up from the anesthesia on their own is the smartest and most beneficial for all involved. A huge lesson can be learned from this especially with the amount of times Arley has had to be put under for various procedures, I think I would know what's in the best interest of my child.
Also, I know a lot of people have been wondering about the results, but I don't have any at the present time. I'm sure you are well aware that you are never given results of any test immediately, and if you have been keeping up on the reading, I have specified that both the Pet Scan AND MRI needed to be conducted before they would even tell me anything because they have to look over all the tests she has had before making a determination as to how to proceed with her care. Please be patient as nobody wants to know the results of what's been going on in that little body of hers for the last almost 11 months than me, her own mother.
Once I have that information whether good or bad I personally need time to process and digest it. Even if she is given the all clear that's not the end of the road for us. Things just don't suddenly stop because you go into remission. We have to have a plan in place and she still has to have scans every x amount of months they tell us for years to come. Arley will still be susceptible to Cancer for the rest of her life and will have to lead a cautious life well into adulthood.
So as soon as I know anything, believe me I will tell you here, I will tell you on her Facebook page, and anywhere else you have chosen to follow her journey. Until then.......
