98.4%

We got some great news today, the two genetic markers they had tested Ella for came back negative! This means that the 4 year survival statistic has increased from 90% to 98.4% and that we don't need to make any difficult decisions regarding starting Ella on a harsher chemotherapy agent or radiation.

This was chemo week number 4, which means she received both Vincristine and Dactinomycin. (Dactinomycin being the drug she gets once every 3 weeks that causes nausea) The zofran that they gave her before the chemo worked well as she had no post chemo puking on the drive home or overnight. She did wake up 6 hrs after the zofran with major nausea and we gave her more zofran and then again this morning (getting medicine in her still take convincing but soooo much easier than 3 weeks ago when she fought us on it no matter many tricks or sweeteners we tried)

The Vincristine causes her to have some aches and pains, mainly she complains of jaw pain radiating up to her ear and occasionally she'll mention a pain in her arm, fingers or toes. These are usually short lived and will go away once she's done with chemo. The major side effect of constipation and we've been giving her medicine which has been working to prevent too much pain. She does have gas pain which is eased by use a heating pad on her stomach.

Her hair is also starting to thin. We first talked to her about loosing her hair after her 2nd dose of chemo. She cried for a just a few minutes. We talked about wearing wigs like the snow white wig Nana had sent her (she decided this summer to be snow white for Halloween.) Now it's just normal conversation like chemo or feeling icky. She's the one who brings it up and always in a positive light "you know, I'm kind of (pause) happy about loosing my hair, because right now I just look like Cinderella or Aurora but when I loose my hair and wear wigs I can be like Ariel or Belle... " She is at a good age for wearing wigs because when she dresses up she believe she really looks like a princess (or a dog, etc)

She did great yesterday with accessing and removing the needle from her port, tears but no fighting and not as prolonged resistance to getting into the right position. The big drama of her clinic appointment was getting the flu shot. More anticipatory anxiety than tears from receiving the shot.

Our friend Brandon created this game board for Ella it goes on our refrigerator and she has a magnet of her face that she can move along to see how far she is on her chemo "road map." She was so excited when she first saw the game and realized that chemo won't be going on for as long as she had anticipated.

And here she is with her post chemo present from the du Ruyter family, Wow! Thank you!