Tests. A Testing. Being Tested. 11-14-17

Headed in for the day of testing.

Today was a difficult day. Informative, but difficult. We toured the hospital from 9-5:30 performing every test I've ever heard of and some new ones.

Based on the tests today (without the bone marrow test results which would change things considerably and should be back tomorrow) Elise has Stage II type B (more advanced symptoms) Hodgkin's Lymphoma. It's in three places: the lymph nodes in her neck that we knew about on the right side, some small ones on the opposite side of her neck, and there is a mass on her windpipe/esophagus low near her stomach.

We start chemo Thursday-Saturday of this week at Children's. We will plan on four rounds of treatment. We re-run all of the tests we did today from top to bottom after the end of round two to check progress. Biggest risks of all are from infection inside and outside of the body.

Chemo is a 21 day cycle. It's too confusing to explain, and all you really need to know is that the process will take 4-to-6 months from start to finish if everything goes very well.

With that in mind, if you are going to visit us in the hospital or in the house: 

1.) You CANNOT COME OVER IF YOU HAVE EVEN THE SLIGHTEST CHANCE THAT YOU MIGHT BE SICK OR THAT YOU MIGHT HAVE BEEN EXPOSED TO SOMEONE WHO IS SICK.  I'm not kidding. Not a sniffle. Not a scratchy throat. Nothing. You could kill her. (Also, please don't bring us food of any kind if you are ill or if anyone in your house is ill.)

Flushed from pain meds, etc. 

2.) If you are going to spend any amount of time in my home or near Elise (spend the night, come watch movies) you absolutely HAVE to get a flu shot. NOT the flu mist (you would be bringing active flu spores into our home and exposing her to them). It must be a shot. Close family and friends need to make arrangements by Saturday if you plan to visit next week over the Thanksgiving holiday.

3.) I will absolutely ask you if you have done both of those things before you are allowed to visit. Not kidding. (Anyone who remembers having to scrub up to touch Lillian when she came home from the hospital knows Mama don't play that.)

4.) Elise is going to feel terrible and be very ill during this process. We are basically killing off all of the bad cells and a ton of the good ones too in her treatment. It's taxing. Be sure you make arrangements to visit. She will LOVE to see you, but she has to rest, so we are going to try to group visitors into blocks of time. You are all still welcome in our home to spend the night with the other kids, hang out, watch movies, play basketball and video games, etc., you just have to be healthy, have a flu shot, and be careful not to spread germs through drink sharing, hand washing, etc. We will also have signs up reminding everyone to wash hands and be healthy.

Probably not supposed to be photographing. Don't give a crap. 

Things we are sad about:

1.) She's going to lose her hair. Absolutely, all of it. (#cancerperk: this might include her leg hair)

2.) She won't be able to go back to school full time. She will have to finish the bulk of her senior year at home. First, because there is too much exposure to illness. Second, because she will not have the energy while battling the cancer. (#cancerperk: sleeping late every single day of the school year and getting to watch every Hallmark Christmas Movie like as they debut)

3.) She is mourning the loss of her senior year. (#cancerperk: there are no perks to this one. that is going to stink.)

4.) The treatments have a fairly strong possibility of harming her fertility. (#cancerperk: we are people who firmly believe in adoption. Elise has told us since she was little she was going to adopt. Guess she was right.)

Elise and Elaina senior drape photos. 

Things we are happy about: 

1.) This particular disease has something like a 85-90% cure rate.

2.) This particular disease also has a very low recurrence rate. Once you're done, most people are done.

3.) We are in a hospital with one of the highest cancer cure rates in the developed world.

Because we are Bad to the Bone.

4.)  The school we attend is going to be able to accommodate her schooling needs and she should be able to graduate with her class if everything goes as planned. The clinic we are treated through has a teacher on staff whose whole job is making sure that kids have materials, tutors, classes, online helps to finish their classes. It's amazing. We also think we will be able to Facetime some of the classes. That is sort of exciting. (Situational irony: I said I'd NEVER home school because of one thing--Elise. Irony? I'm now going to have to partially home school her. Well played, God. Well played.)

5.) If everything goes as planned, Elise will be able to make her Senior banquet, graduation, even the play. They said they'd try to make sure she was healthy to attend some special events as we go too. We hope she's finished treatment in 4-to-6 months.  The doctor team said she should progress exactly like she will be able to start college in fall 2018.

So, we are going forth a little happy, a little sad, and a lot shell shocked. We found the lump and saw the doctor three weeks ago. We saw a specialist nine days ago. We've had two surgeries and fifteen tests in five days. We were diagnosed four days ago, staged today, and starting treatment in two days. Literally, our entire lives have been turned upside down in a handful of days. Be patient when we can't speak and don't know what to say or don't want to talk at all.

We love you all and can't express enough how much the calls, texts, cards, notes, gifts, etc., have meant and will mean as we go forth. 

Love,
Charlotte &
the Fun Bus

#BigEkickingtheBigC
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