Scarlett's Battle with Cancer

Scarlett was born 07/12/2015 and was diagnosed with a mixed Alveolar and Embryonal Rhabdomyosarcoma on the 4th of April 2017.  I am sure most of you will use your Google machines on that one, but for the rest of you, it's a very rare fleshy tumor around 350 total cases in all of the U.S. every year.  Below is how we found out, or if you want to just see the current treatment plan, I have a section below you can just scroll to.
It has been a very trying year, to begin with, as we found out that my father was diagnosed with small cell lung cancer and is still currently going through treatment.  Shortly after, we actually found out that we will be expecting twins late September this year, so at this point, we were already a little nervous, but most definitely excited.

People ask how we found out about the cancer.  It started in late December with a sag or wincing expression when she was upset. We brought her in in January and they found that she had an ear infection, so we were given antibiotics and sent home.  Oddly, the sag in her face cleared up so we thought it was resolved.  In February, we noticed something inside of her ear; it looked like insect larvae, so we went back in and were referred to ENT (Ear, Nose, Throat). 

The doctor said it was most likely a polyp so a procedure was set for late 4/26 to remove the mass and put tubes into both of her ears. She began having a lot of discomfort and discharge coming from her ear, plus it began to have a foul odor.  

We determined 4/26 was too far away. My wife placed multiple calls and finally got the clinic to move the appointment to 4/3, almost a full month sooner.

After the procedure the ENT surgeon said it was something more serious and could not get it all out; he still couldn't even see her ear drum. He advised he thought it was cancer, but could not confirm until the biopsies results came back.

On Wednesday we received the news we were dreading. It was confirmed that it was cancer.  We were scheduled to meet with the oncology team on Thursday where we were told she had rhabdomyosarcoma.  We received limited information outside of what it was and that our 21-month-old daughter would have to be subjected to a number of tests starting that Friday.

Over the course of the next two weeks, she has had 3 CT scans, an MRI, a PET scan, bone scan, bone marrow biopsy, spinal fluid test, and her lymph node biopsied. We have found out the tumor is about 1 inches by 2 inches (4.49 cm) and pushing against the brain all the way to her inner ear. They believe it's in the right lymph node.  We were very lucky in the fact that from all the tests it seems to be only on the right side of her head right now. Because of where it is, the type of histology, and regional location, the oncology team is treating it as an intermediate risk. (We have not been told a stage, but we believe 3.) 

We had everything completed where we live here in Marshfield, WI.  Although we have faith in our oncologist, we still wanted a second opinion. We decided to take her to the Mayo Clinic in Rochester, MN. The oncology team there agreed with Marshfield and believed she was a good candidate for proton radiation treatment. They are one of a twenty-something places in the U.S. to have proton beam radiation.

Treatment
Chemo already started 04/14/2017 and is a 105-day plan. She is on 4 different chemo drugs at this time.

Radiation begins approximately  05/15/2017 at Mayo in Rochester, MN and will be 6 weeks long for 5 days a week to start.

Although she is not terminal, it is inoperable.  They have had success with chemo and radiation, but statistically, her chances of a cure are 50-60%. 

My wife and I are switching off weeks being there with her, as both of us not at work this extent is not possible.  It is roughly a 3-hour drive one way.  We do have a referral in for the Ronald Mcdonald house though so hopefully we will be able to spend a decent chunk of the stay there; however, it is first to come, first serve, no reservations with a wait list. Though they do have a network of hotels with medical rates to assist in cost.

We return to Mayo 5/1 for a feeding tube as the radiation may make her unable or unwilling to eat. 

Some of the effects of treatment are obvious and thankfully some will be temporary. However, the oncology radiologist has made it clear that even with the advanced proton therapy, Scarlett's cranial bone will no longer grow, leaving her with a lopsided head. In order to fix it, she will require reconstructive surgery in the future, potentially multiple times, to correct it.  She will also lose hearing in her right ear.

Thankfully we have medical insurance so we will only pay $11,000 out of pocket for her treatment this calendar year. We will not know for awhile whether or not her treatment will continue into the following year.  With the radiation at Mayo, transportation, potential housing costs, and loss of work, the costs of treatment will exceed the $11,000 quickly.  We also didn't anticipate how much time and loss of work between us there's would be, even with the generosity of our workplaces.

I know there is a lot of information here and I don’t expect everyone to read everything. I wish I didn’t have to ask for help, in fact, I fought with even doing this. Every day I just wish it was me instead of her or it was just a really long bad dream that I would just wake up from. 

I will do my best to get lots of pictures and updates as treatments progress, and if any of you have questions please don’t be scared to ask, I will do my best to answer them.

I don't expect everyone to give.  The kind words and prayers are also needed. Please share this if you can.