A momma's perspective on Day 1 of chemo

Here's this momma's perspective on day one of chemo.

Arrival @6:15am. I slept very little last night. I was tired and for the first time feeling really stressed about what I was about to put my daughter through. Right before they took her, we went potty. I tried to convince Emmie to run for the exit with me!! She said "no mommy, we'll get in trouble." Wow! Who is this rule follower?!?!?!

She came through the port placement surgery like a rock star! Came out of anesthesia doing great! Spunky! Asking for crackers and water! She knows the drill! She was in a little pain from the port, but over all doing great. 

It was at this moment that I suddenly hit my wall. I'm not sure what did it for me, but I had this overwhelming flood of emotions, like someone opened the floodgate and I couldn't hold it back anymore. I had to leave the room. I try not to ever break down in front of Em. I spent a good 20 minutes pacing the hallway outside of surgery in tears, but I collected myself and returned to my little super hero who was ready to get discharged. 

We worked our way up to the oncology/infusion area with the help of Tiffany, a really great RN coordinator! She sat with us and went through an overwhelming amount of information. She was seriously the sweetest, nicest person ever! 

Emmie's infusion started at 12:12pm it was done by 1:00pm. They had already given Em her first bag of chemo drugs without her really even noticing! She was seriously amazing today! 

We left at 1:15pm. Emmie wanted chicken nuggets and a milk shake. We stopped and got food, were home around 2:15. Emmie started playing like nothing had happened to her today. In fact, she was mad that we wouldn't let her go run around outside?!?! What?!?!

The stress leading up to day one has been overwhelming at times. I'm happy day one is over. I'm happy she handled it like a rock star! However, this is going to be a long road. It's a 28 week regimen. For the next 10 weeks, we get weekly infusions. After that she will get an infusion every three weeks until April 24th. It's going to be a long winter! I pray she continues to take all of this like the superhero she is!

A friend showed me this quote yesterday. I added it to our family photo. It fits Emmie so well!!! 

God is within her; she will not fall. Psalm 46:5

  

Update on Emmie's latest surgery and cancer diagnosis

Well, here we are again. It seems like we were in a very similar spot last year. I'll give you a rundown of the latest events in Emmie's medical journey and a look ahead.

We have been feeling pretty good about Emmie's medical health lately. She's off all BP meds, she's completely recovered from the major vascular surgery last November, her cancer scan in July was clear, all was looking great! 

Late August, we met with the neurosurgeon who will do Emmie's first back surgery, the tether cord snip. He wanted an updated MRI of her spine. The MRI showed a spot on her spleen that looked suspicious. So, oncology looked at it, as well as a few other doctors. They wanted another image study on the spleen, so on Sept 15th, she had an MRI of her abdomen and brain (for other reasons which I'll get to later). The new imaging of her spleen showed the spot had already grown a centimeter in a month. This rapid growth pushed the oncology team to act quickly. So, on Sept 25th, Emmie's spleen was removed. The spot was a tumor and it was another Wilms Tumor. The same cancer she had last winter.

So, now we will put back surgery on hold again, and we will yet again conquer this ugly thing known as cancer. Unfortunately there is no getting out of chemo this time. So, this week we will meet with Emmie's oncology team to answer any questions she has, or we have. Next week Emmie will get a port placed in her chest, and the following week she will start getting chemo for a Wilms Tumor.

There is no other way to put it.... Cancer Sucks!!!
I hate this ugly disease. It has taken so many people from my life, and now I have to watch my baby girl endure something no one should have to do, but especially not a child. Emmie is such a fighter though. She inspires me every day. She is stronger than most adults, and she will persevere through this battle. She will come out on top, and she will beat cancer! She is my super hero! When she said she wanted to be wonder woman for Halloween, I thought, wow how perfect! She really is a wonder!

There are still so many pieces to this puzzle. The doctors are still discussing neurofibromatosis. We have gone through some genitic testing, which came back negative. We have had a pathology report from MOTTS that came back positive. We have had a pathology report from Riley come back negative. So, the MRI of her brain was to look for signs of it in her brain. They did find one neurofibroma in her brain (at least that's what they think it is) but they did not find the other markings they were looking for. So the saga continues.

One thing is for sure. Emmie is unique. She is not a cut and dry case. Even with the tumor on her spleen, the doctors are baffled by it. They have never seen a Wilms Tumor on the spleen before. They can't find it in any of the medical journals. The urologist told us that he has removed hundreds of spleens, but never for a tumor! This girl is going in medical journals for all kinds of things! 

I am constantly reminded of this passage when I look at Emmie! 
             Psalms 139:13-16 For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven togeher in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Please continue to pray for us and Emmie. Your thoughts, prayers and words of encouragement keep us going during this long and sometimes difficult road.

Thank you!!! Tracy (Emmie's mom)