It’s a roller coaster baby…

So let me tell you about yesterday…

First of all, I’m a store manager for retail. I work at a good company (I’m not sure I should say because who knows who’s watching!) that has been very understanding about Katie-Anne. I was moved to a new store a few months ago because it was changing into a ‘Store of the Future”. This basically means it’s a huge remodel, while the store stays open, and when it’s done it will be beautiful and amazing. Seriously, they are beautiful. I’m very lucky to have been given this opportunity. However, with it, comes a LOT of pressure. All corporate eyes are on this whole project and it is very intense with a lot of corporate involvement. I always wonder why they gave me the store because they have always known my daughter had cancer, a very aggressive kind. I will say, though, that I have never used it as an excuse to get out of work. I just don’t want to be that person. As the leader, it is my job to be the best example I can be.  I think that is why they gave me the job still knowing that she was so sick.

I had to reschedule Pooters doctors appointment to Friday (yesterday) because Dr. Watt needed more time, which had me freaked out, but what can you do? I found out Tuesday while at a district meeting and told my manager that I would have to leave at 12pm on the day of his and other corporate visitors, and without blinking an eye he said sure. Fast forward to yesterday. I’m at work at 6am. Lots of crazy stuff going on. I’m a hot mess, like really…a hot mess. There is so much to get done that I can’t even type it all, yet all these corporate guys come in, work really hard to get everything done with me that they needed to, tease me mercilessly in between, so that I can get out by noon to take Katie-Anne to see Dr.Watt. I’m just lucky because in previous work lives, that would not have been the case.

I had Celina drop off Katie-Anne at my work, everyone got a quick visit, which I wanted because I want them to know her. Then off to the hospital we go. It got up to 104 degrees yesterday. I’m pretty sure my skin was melting off of me…or I’m just overweight (which is actually the truth lol). We get to the hospital, and roll into valet (I haven’t paid for valet in over a year because the guys there are amazing and I love them in a totally platonic appropriate way) singing at the top of our lungs the Moana soundtrack. We go to check-in singing Moana. We ride the elevator singing Moana. We get off the elevator and into clinic singing Moana. We were singing loud and proud and I could not care less what people thought of us…though everyone was smiling and laughing. You see, she loves to sing with me, it’s our thing. She asks for Mommy’s songs (I’m not sure why they are mine, but I sure wish I was getting royalties from them!), we roll the window down, and I really go for it. I mean I do the whole car singing, crazy lady, belting out the words…and she loves it, I mean absolutely loves it. She sings with me and when she hits a verse she knows…watch out! I’ve had people watching me before in the car at lights, but I don’t even care. Truth is…I want these memories with her. I didn’t have anything like them. I -want- her to look back and tell her kids that she loved when her mom sang in the car with her, that she remembers the wind on her face, and the joy in our hearts.

Back to Dr.Watt. We get our labs and head to room 14. Which, let’s be honest, I already don’t like because it’s an even number. We aren’t in there for very long when Dr. Watt comes in with a huge stack of papers and I’m thinking it permission paperwork. She sits down and she looked tired, not that she still wasn’t gorgeous, but probably one of the first times that I thought she looked like she needed a break. I’m getting nervous at this point because she is always smiling and happy, or calm and smiling if it’s bad news, but she looked kinda beat down. She proceeds to tell me all of the results from the tests again which is good but has me a little confused because we had already been over it, you know? Then she takes this big pause and says, “We aren’t going to do radiation”. What?! Why?! What’s wrong?! All that goes through my head in a split second. She basically told me that the radiation team said that if we wanted to radiate because those are original tumor sites that they could do it, but if we wanted to radiate because it was a new spot on mIBG that they didn’t see the need for it. So right about here, my head is tilted like a yorkipoo. Then she goes on to tell me that they think the mIBG that is lighting up on the scans (but not on PET) are matured spots they have turned into ganglionneuroblastoma (spell check won’t even touch this one btw). They think the spots that are lighting up on the PET scans are just metabolic activity. Basically they think where they took out her ribs, they are growing and knitting with the pig collagen and they is why it is lighting up on the PET. Dr. Watt told me that she wanted the extra time to get everyone she could to look at all of the scans so that she could get multiple opinions about them.  She kinda takes a deep breath and then tells me that they don’t think her cancer is active right now. I just blink kind stupidly at her. Wait what?!? Not active? She tells me that she isn’t NED (No evidence of disease) but she’s as close to it as she can get. She still has disease but they believe that it isn’t active and that’s why she needed more time so that she could get more eyes on the results to confirm what they thought.

So I bet you thought that I stood up and did  sounding rendition of “Hello Dolly” jazz style…but you’d be wrong. The thing is, and Dr. Watt even warned me, is that in two weeks when we scan for Sloan, she could have 5 new spots. That’s just how Neuroblastoma is. That is why Dallas doesn’t have a bell because they are so superstitious about it ( which btw I totally get and support so no bell ringing around here man). So I’m sitting there in my seat with Katie-Anne watching Kinder egg videos and wondering what the heck is going on. Three weeks ago I thought her neuroblastoma was growing and I was crying in my car thinking I was going to lose her. Now, I’m sitting in the clinic afraid to be excited about her not having active disease. It’s like a rollercoaster…one week you are down and the next week you are up. You can’t even blame the doctors or the people who read the reports, because until you see everything together, you can’t get the whole picture. Plus, if I’m completely honest, I’m so grateful that Dr. Watt took the time to put it all together instead of just cranking out a plan all willy nilly.

So what do we do now you ask? We are doing low dose ICE because they just want to give her a maintenance dose and get her to Sloan. We have to redo all of the imaging which is fine with me because then we can see if the results all hold up. Maybe then, just maybe, I can start to be excited just a little. I asked Dr. Watt if she is happy, was she optimistic? She said yes. I asked if she is “maybe almost going to be okay”. That phrase seemed to work for us. Dr.Watt asked Katie-Anne if she could have a hug. It’s taken Katie-Anne awhile to let Dr. Watt hug her…she’s a tough sale, my Pooters, but she went to her and let her pull her on her lap. Dr.Watt wrapped her arms around her and very softly said, “I’ve had a rough week this week. I’m glad I got to see you today and give you good news.” then she kissed her little bald head…and I almost lost it. I think we all know what she means when she says she’s had a bad week…and for her to be happy about holding my baby and giving us good news…well, lets just say I was touched.

This journey we are on seems like one big cruel roller coaster, but when you meet doctors like Dr.Watt and you are a better person for knowing them, even if it is just superficially, it almost makes it better…almost. That’s just how it is when cancer happens.

 

4 Replies to “It’s a roller coaster baby…”

  1. Wow! I’m thinking answered prayers for sure. I’m crying reading this. Even though I’ve never met Katie-Ann, I love her. I’ve prayed for her often, wear the t-shirt I bought and think about her. Enjoy seeing her in her Belle dress. I’ve prayed for her family. All of you. Thanks for sharing and know you’re not alone.

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  2. I am not even sure how to roll with this one. Today, all travelly that we are, I am happy to have survived this place. Grateful to breathe another day and then I read this and feel so damn selfish. I know that Dr Watt is a hero beyond the definition we generally hold to light. To do what she does, to face people eye to eye and be just honest about those ups and downs is something that about 1% of the world can do. But she keeps on doing it, because the days when she gets to hold *your* baby (dare I say a little of my heart too) and breathe a second of happiness and good news is just plain worth all my tears and I am
    Glad for the realization that I am
    Selfish. It reminds me what to be happy for and to shower you guys with much more love and all the feels you truly deserve. I know that somewhere in this is the description of what happened and what it all meant but I was reading so fast to find the outcome that I have to go and read again. I love you, we love you, and I am praying like hell it stays what it is ans no new spots.

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