Morgan's Army

We got the go ahead this weekend during our week off from Chemo to take a trip up North! Thank you to Nancy and Fred Tregaskes for letting us use your place up in Prescott last minute. Our senses were in extreme overload the entire time and all of us slept better than we have in months. We felt like a normal family for a bit!

Liam wondered the woods in the back with Daddy and I read a book while sissy slept. It reminded me of a time before cancer took over all of our lives and when we could just exist with no worries. Morgan wanted to explore, play, and use her new found energy to make the most of it.

On the way up, we stopped at our favorite winery and where Liam took his first steps many moons ago: Page Spring Winery. Daddy drove so Mama could relax with a few tastings.

We also got to visit our favorite Mayer residents: Jason, Jessica and Char LaGreca and they allowed us to play fire truck! The kids were grumpy as hell because we woke them up but Mommy and Daddy enjoyed the hell out of it. Thank you guys so much for breaking up our road trip and it was so great to see you!

All in all, it was exactly what this family needed! Now on to start Cycle 2!

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.

Sorry I haven’t posted an update in so long but I’ve been sucking up at much time possible with my happy baby girl. We were released from the hospital Friday so everything went as planned. Morgan impressed the doctors so much for her resilient attitude and everyone was so happy she has been reacting well on this new treatment. I, of course, am happy that she is up and playing like a normal 4 year old. She was sick right after the chemo but we were in the hospital so they were able to stay in front of the nausea and get her through it. She still has occasional pain and nausea so my job has been to try and figure out which symptom she is showing and try to control it. Its amazing how this experience has force me to learn the difference in moans from my child and which meds to give.

When we checked in Wednesday at PCH, Morgan received a couple fun surprises! While we were waiting for her named to be called, she was able to make two pictures frames: one for her baby bro and one for herself. It was at this point that I finally allowed myself to talk to a few of the organizations that help support the families going through. It is so amazing how many people are here to support and guide you through this journey. It is a very loving and kind community.

One of these amazing organizations is the McKenzie Monks Foundation! They put together these amazing Kenzie Kase’s and provide the perfect bag for each child. I have no idea how they knew EXACTLY what to get Morgan but they hit the bulls-eye with everything. From the pink bag, to the Shimmer and Shine dolls, and even a BRAND NEW IPAD! She was so excited and her smile below says it all!

Once we got up to the 7th floor, there was a GIGANTIC football player by the name of Max Starks that came by to meet Morgan and hang. He was the nicest guy and brought Morgan a Teddy Bear which she gave to her little bro.  She wasn’t feeling too hot from the Chemo the night before but kept talking about  her “football player” and was wondering why he didn’t bring any cheerleaders.

Brian Lagreca fixed that cheerleader situation by providing Morgan with her very own signed picture of the Cardinals Cheerleaders. Daddy says “Thank you Brian but try and get the real thing next time”.

By the time we got home, she was surprised again with the new Peppa Pig kitchen! It didn’t come with enough food so Morgan says we need to go to Target. Her brother also loves it but if I want to avoid an MMA fight in my playroom, I try to give them “individual time” to enjoy the new appliance.

Morgan got herself her very own poodle which she has named Joy. This will have to do until we can get her the real deal. Thanks Faith Phelps!

Let’s see what else…..OH! My best mate, Barbara Roether, painted on a medicine cabinet for Morgan. After receiving it in the mail from Uncle Eric Smith, she stole it and painted it. It’s my inspiration everyday.

She also finished a painting she started many many months ago. I fell in love with it the second I saw it and she’s been working on it every since. May I introduce: “Flag of She”

We go back Wed again this week and get home Friday if all goes well but we will have a week off after before we start Cycle 2. Ill keep you all posted and thank you for all your support!

#fuckcancer