Morgan's Army

As we start approaching Morgan’s last cycle of chemo in her protocol, I sent an email to our Oncologist asking about the next move. In Morgan’s protocol, she is to do a certain number of chemo cycles and after the 3^rd cycle, we are in prime territory for a new liver. Since diagnosis, she has been on the list and the idea is that as we prepare with chemo, she moves up the list. After she is supposed to get a new liver, she receives two more cycles. Our window closed and we began the first round of “after liver chemo”. Not a problem and it happens. We wait…….and wait……and wait…….Still no fucking liver.

We should have a liver by now and its not here so I email the team and I’m like WTF do we do after this next round. Protocol fucking ends so what is the plan? One doctors says the word “live donor” and I’m off. Phoenix doesn’t do it so I call; Boston Children’s, Stanford, and LA.

So much info and so much support from each city but by Wed of this week, we get a call that we need to come to LA. There is so many reasons for this but the main reason is that we no longer want to wait for a child’s liver alone. We are joining the list at Children’s Hospital of LA in order to receive possible live donor, deceased adult or pediatric. This surgeon literally rebuilds veins and vascular craziness that no one in the world can do.

The plan was to air evac us out on Sunday (Santa came Thursday) and while I struggled with the idea of not being with my son for a long period of time, I needed to make a move and I’m not waiting for a kid to die to save my daughter. Insurance went back on a verbal confirmation and funding was pulled for transportation (they’ve paid everything so far and will cover LA so I am not complaining but still a kick in the nuts). We check Morgan in for chemo today and Jason Mraz is there and we get to have him to ourselves. I feel like I’m on drugs with so much adrenalin running through me that its like my own little Coachella moment. He touched my arm, I swooned. I would have made out with him but A. Tom was there and B. I’m pretty sure I would have been escorted out which would have been inconvenient since my kid has cancer and all and I need to be there.

But that’s not the best part of my day. As I leave the hospital trying to figure how to get my daughter to LA without a nasty germ ridden commercial flight or drive after chemo, I pick up my son from daycare. As I am talking to the staff, the owner is listening and he’s like, “Hold up.” Makes a phone call and the next thing I know I have a team of pilots willing to take us whenever and wherever. Not only will they fly us to LA but they will also fly us back to Phoenix if a liver comes in here as well. We now can spend xmas at home as a family! (Kids already opened presents!!! ugh)

We were going to have to risk removing ourselves from Phoenix listing to get on the LA listing because we had no fast way back. We do now and its insane.

I know I’ve been silent but I just don’t want to be attached to a device when my time is so precious to two little ones. Its amazing that when I talk, people are listening and the world is so unbelievably kind. I would never wish this on anyone, but I think we are handling it awesome and it is only because of our family and friends that refuse to let us fall. Even COMPLETE strangers are willing to get this war won.

There is so much more that I could talk about like the support we have received from LA knowing we might come as well as people willing to help us with Liam while we go win this.

I could get a call tonight with a liver and this is all in vein but, for now, we plan on heading to LA. I hear we are right near a famous area and depending on which side of the hospital we are on, I will have a sweet view of some “ladies of the night”. So here’s hoping!

Oh and if you made it this far: We sent the scans from WED to Boston’s Children’s Hospital overnight and their surgeon is looking at it because apparently he can take cancer out of livers that other doctors have deemed inoperable and needing transplant. He calls and we are BOSTON BOUND. If anyone can save this liver, it’s a bad ass in Boston. Slim chance but here’s hoping!

That is all I have. Its been a good fucking day.

I don’t know why I haven’t been posting any updates. We have had a lot going on and this website was the last thing on my mind which it shouldn’t be. You all care so much about our journey and I promise to do better.

The second cycle of Chemo went off without a hitch last month……until the last week. Morgan was admitted for an infection and we had to spend about a week and a half in the hospital. It took our week off of everything and turned it into a long stay in the hospital. She was cleared for the infection but her ANC was low so we had to push chemo off for a few weeks.

During this time period, it was discovered that Morgan’s Grandma (Tom’s Mom) has been diagnosed with Bcell Non-Hodgkin’s Lymphoma. It’s a fast-growing large cell Lymphoma but the one that can be treated the most of all brain cancers. Obviously, this is a very hard time for us, but especially for my husband, Tom. He is very close to his Mom and we have really counted on her as a helper with Liam and Morgan. She has started chemo and we all continue to come together as a family and go at this battle stronger than ever. Since when did cancer become so normalized in our lives? UGHHHH

I found myself in a pretty dark place this week or so. I learned today that I was suffering from SCANXIETY.  Due to Morgan’s infection, her planned scans were pushed out until yesterday and I was going insane. I wasn’t’ t sleeping, answering my phone, or making much contact to the outside world. GOOD NEWS: Her scans are looking great and the liver transplant team likes what the see! My biggest fear is losing the opportunity for a new liver so these good scans keeps her spot and allows her to keep moving up!

We went in today to check in to begin our 3rd Cycle but our numbers aren’t high enough so we have another weekend at home.  She is doing awesome and her energy level has not wavered. She’s my hero.

I promise to update more.