Cycle 1 Week 3 Update

We are home! Week 3 of this new cycle is complete and we will get a week off from chemo and begin cycle 2 the following week. Morgan is doing well and although there is some nausea, we have avoided throwing up and trying to make her as comfortable as possible. I have been having a lot of emotions lately and they are becoming harder to control. There is a lot of boring down time and your mind just starts going to such dark places that it can really fuck a person up. I don’t stay there too long and I have been thankful for friends who allow me to lean on them and tell me stories COMPLETELY unrelated to what my family is going through. It takes my mind off of things so keep ‘em coming.

Liam’s daycare has been sharing with me that he has been sad in school lately. I figured Liam was young enough that he could be distracted through this process enough and not remember a thing. The little bugger is smart as hell and that plan needs to be tossed out the window. He wants to be held all day in school and it hit me that I am not giving him what he needs. I am not doing enough. When I am home, I spend so much time, cooking, cleaning, washing sheets, medicating sissy, and making sure she was okay when all my little dude was needing and asking for was to be held. I didn’t need to set up a painting station for him while I try and get some dishes done…..he just wants me. So my house is going to be messier, the dishes will be dirty for a little longer and laundry will have to wait. This Mama needs to spoon her brilliant, duck lipped baby whenever possible.

I have realized that I need to keep moving forward in this battle and that sitting and feeling bad for myself or Morgan is not an answer. While we have a chemo plan and we are starting to find a routine, I can not get comfortable. I have to keep the offensive at all times and not allow defense to be our strategy. I have decided to make a few moves so that the enemy is flanked on each front:

First, we have reached out to Boston Children’s Hospital thanks to an amazing group of women back home and are moving forward with a second opinion. I have full confidence in Phoenix’s Children’s hospital and the more brilliant minds on my baby’s fight, the better. They are currently getting all of her records and can work with our team here remotely. There are a few goals I am hoping to accomplish and some specific items I want looked at but I am completely confident that my Bostonian doctors along with my AZ docs will ensure that we are doing everything we can.

The research that is being done along with trials are changing everyday and this is something I am having to learn fast. Check this out: this team in Boston is able to pull the DNA off of cancer cells and sequence this DNA in order to match it with the chemo that will fight it best. I don’t know if that’s what we are going to do but we will now add to our brilliant team of hepatoblastoma doctors with even more wicked smahht doctahs. How do you like THEM apples, Cancer?!?!

We have also made an appointment with a naturopathic doctor who specializes in oncology. As I would roam around the hospital, I would hear this person’s name often and decided to move forward with making an appointment. I want to make sure Morgan is as strong as possible so she can fight this cancer but also be prepared for the transplant when the time comes. I don’t know anything about vitamins or natural approaches to chemo symptoms so I am hoping this gentleman will be my guide in that direction.

I have also wanted to become informed with the benefits of CBD oils or anything else in that category that could help my daughter. My worry from the beginning of that process is that while oncology supports it, we also have to worry about disqualifying Morgan from the transplant list. I reached out to the liver transplant team and they have no problems with this at all so we are a go.

Here’s a quick video to help explain a bit:

I would like to make this VERY clear. This is not in replacement of her current treatment but rather to help supplement her health and well being through this process. I will let you all know how the appointment goes with the Naturopathic Doc next week but he is one of the only ones that PCH works with and they all have DEEP respect and trust in him with their patients. That is enough for me.

Off to pay bills and catch up on Big Brother while the princess sleeps.

Thanks for always loving us.