Our Story

If you are here, then you are part of Emma's team. Thank you for your overwhelming love and support to Emma, her parents, her sister and brothers. We are so grateful to all of you, and particularly to the incredible staff and volunteers and Primary Childrens Hospital.

ER visits so far: 21
Anesthesia count: 15
Sedation count: 6 (Sedation isn't as bad as anesthesia - so these are saves from anesthesia)
Blood Transfusions: 6
Platelet Transfusions: 4
Port Access: 87
Hospital Admissions: 6

12/12/15

Friday, November 27, 2015

No More Chemo

Thanksgiving day was Emma's last dose of Mercaptopurine - 6 (6MP) and her last dose of Methyltrexate. These are oral meds she has taken since beginning maintenance.


From wikipedia:

Some of the adverse reactions of taking mercaptopurine will include diarrhea, nausea, vomiting, loss of appetite, fatigue, stomach/abdominal pain, weakness, skin rash, darkening of the skin, and hair loss. Serious adverse reactions include mouth sores, fever, sore throat, easy bruising or bleeding, pinpoint red spots on the skin, yellowing of eyes or skin, dark urine, and painful or difficult urination. Other more serious side effects include black or tarry stools (melena), bloody stools, and bloody urine… Mercaptopurine causes myelosuppression, suppressing the production of white blood cells and red blood cells. It may be toxic to bone marrow. Weekly blood counts are recommended for patients on mercaptopurine.

And some of the highlights of Methotrexate, which Emma took weekly by mouth, except on weeks that she had it intrathecally, also from Wikipedia:

It is used in treatment of cancer, autoimmune diseases, ectopic pregnancy, and for the induction of medical abortions. It acts by inhibiting the metabolism of folic acid… Although methotrexate for autoimmune diseases is taken in lower doses than it is for cancer, side effects such as hair loss, nausea, headaches, and skin pigmentation are still common. Methotrexate can be taken orally or administered by injection (intramuscular, intravenous, subcutaneous, or intrathecal). Oral doses are usually taken weekly, not daily, to limit toxicity. Routine monitoring of the complete blood count, liver function tests, and creatinine are recommended.
We are really grateful for the benefits of these drugs, and couldn't thing of anything better than to be finished taking them for Thanksgiving.


Friday, November 13, 2015

Last IV Chemo

Today is Emma's last I.V. chemo. It is her last dose of Vincristine. She has had Vincristine every month since she started the maintenance phase. From Wikipedia you get the following, which is, I think, fairly accurate.

Vincristine is a chemotherapy medication used to treat a number of types of cancer. It is given intravenously and works by inhibiting mitosis (stopping cells from dividing properly), causing the cells to die.  The drug accomplishes this by binding to the tubulin protein, stopping the cell from separating its chromosomes during the metaphase; the cell then undergoes apoptosis. Because cancer cells divide more rapidly than healthy cells, the drug affects them more.
Most people experience some side effects from vincristine treatment. Commonly it causes a change in sensation, hair loss, constipation, difficulty walking, and headaches.
 Vincristine is a vinca alkaloid from the Madagascar periwinkle Catharanthus roseus (formerly named Vinca rosea).
Vincristine is delivered via intravenous infusion for use in various types of chemotherapy regimens.
She still takes oral chemo until Thanksgiving.  

Today she also starts her last 5-day steroid pulse. If I am very good, I'll post about her last steroid dose.

We scheduled her port removal for next month. 

We ran into Lilly, Emma's friend that has been fighting leukemia nearly as long. In the pharmacy we met David, who we have been praying for since he was diagnosed this summer. 

Dr. Engle isn't in clinic today; but we saw Doug as usual. She always sees two doctors and Dr. Luke Maese was filling in. We haven't seen Luke for more than a year; but he was the on call doc the weekend that Emma was diagnosed. 

It was such a fitting book end to her treatment to see Luke again. Emma did not recognize him. So we asked if she remembers that first week. She doesn't. 

Emma doesn't remember the first week in the hospital. Already she has forgotten. I'm so grateful. 

Thursday, November 12, 2015

How to Be Brave

Emma has some experience with hospitals.


Emma has some experience with surgery and operating rooms.

Emma has been poked with a fair number of needles.



A few months ago, her nurses asked if she would mind allowing another patient to come an watch Emma's port access. Emma was happy to let a less-experienced patient come and learn. They picked Emma because she doesn't cry, and she handles port access pretty well. She explained how to be brave to this other patient - all matter-of fact.

I asked her again a few days later to tell me how to be brave.

"When you are scared, you just have to think of happy things."

I couldn't help thinking of a Disney song - here are some of the lyrics from Peter Pan:
Think of the happiest things.
It's the same as having wings

Think of a wonderful thought
Any merry little thought
Think of Christmas, think of snow
Think of sleigh bells - off you go!
Like a reindeer in the sky
You can fly! You can fly! You can fly!

When there's a smile in your heart
There's no better time to start
Think of all the joy you'll find
When you leave the world behind
And bid your cares good-bye
You can fly! You can fly! You can fly!
Sometimes it is hard for her to be brave. Sometimes it is hard to think of happy things. But this sweet girl keeps on trying and teaches me every day.

Monday, November 2, 2015

Bengals Again

In September, Millie's Princess Foundation was invited to present their proposal to Brighton High School again. Brady asked me to come tell them what it meant to be part of Brighton High School last year.

I was only too grateful and humbled to get to talk to the officers. We were delighted when the Bengals chose Millie's Princess Foundation again. They have three brave new heroes to work with. They even invited us back to Brighton for their kickoff assembly.


We loved having Emma be their princess last year, and we are so excited for those amazing high school kids to do it again this year for Devin, Tyce, and Elaina.

Thank you, Brighton High.

One of the officers is also one of the Young Women I work with at church. She tells me that their fund raiser is her favorite part of high school.

I believe her. Those kids and those families are going to be changed in the next couple months. The world is a bright beautiful loving place, and people are good. Doing good builds so much.