Had a great day yesterday at Romp n' Roll.
We had our "Caringbridge Open House" and had a ball. The families who came (including us) really seemed to enjoy being able to just hang out.
Charlotte had a very busy morning yesterday as she climbed down two full flights of stairs (one at home and one at church), played with friends in the church nursery and was a wonderful hostess at the CB open house.
She conked out about 3 and had a nice nap in the office while things wound down in the gym.
Her evening was not bad but the nausea comes and goes. Almost on cue with the timing of her anti-nausea meds. The worst part is that she seems to be "getting used to" the routine of telling us her belly hurts, keeping the tub near, etc...and I really hate that. I also hate that despite the medicine tasting good, she fights it pretty strongly. We have had to bribe with chocolate, Peeps, and just lately, Tylenol Meltaways. She loves them. Sometimes we give her a small piece of Tums. That will work too.
Please save Friday, April 10 for the head shaving party. We're going to use one of our Birthday Bash slots. That's about as planned as it is right now. I'll be working with our "planning committee" to get details up this week.
The hat shower is still just an idea at this point, I think. A more solid date should be coming soon. Rachel should be getting back with those details.
Wish I could think of more right now but I need to get going anyway.
I don't have much to add regarding Charlotte. I agree that she is now definitely feeling the impact of the toxic medicines on her body. She is understandably tired given the fact that she has eaten very little and vomited much. I think today will be another rest day.
Unfortunately, our child care for tomorrow has become ill and cannot watch Charlotte. If anyone is available to watch Charlotte at our house tomorrow from about 8:30-1:30, please let me know. I know that some folks with kids have offered to have her come over to their house but with all her needs right now, I don't think that is a logistical option. Any healthy adults or kids are welcome at our place, though.
Anyway, I will be adjusting the care calendar. Please sign up there or email me asap.
In other news, we have received many ideas regarding the fundraising and I think we have some "chairs" in that area who will work with us. We have some ideas ourselves and will let you know. I had originally loved the idea of the hat shower but she is already being "showered" with great gifts of hats, etc. and we already have quite a collection. Have to think on that...
On the insurance front, we have also received some suggestions and ideas. I have folks with legislative connections doing some "homework" for me and I pored over our policy over the weekend and have questions for both Humana and the Insurance board which I will hopefully get answered through phone calls today.
I have to echo Roger's sentiments about the impromptu Caring Bridge party yesterday. It was small but fun and good to share stories. We are hoping to make it a somewhat regular event and hope we can add new families to the mix. We are also already talking with the Starlight Foundation about using Romp n' Roll for official "events" from time to time. Just one way that we can hopefully give back a little when so much has been given to us.
Gotta go tend to Charlotte and clean up my mess on the floor!
4:53 PM Update
Poor Charlotte! It is so true that it's the medicine, not the cancer, that makes our kids sick.
She has had a very rough 24 (or so) hours. She has been unable to keep anything substantial in her tummy (even if she wanted food) and has been very tired. The nurse called for a somewhat related matter (our insurance company doesn't have Zofran in its formulary so we had to pay for it out of pocket...go figure!). She is going to get the approval for that but in the meantime while checking in on Charlotte's condition she decided to send out some IV fluids and IV Zofran (which is what she had in the hospital and it worked well). So we are waiting for the home health nurse to come out and do her thing. Meanwhile, Charlotte is sleeping like an angel on Daddy's chest.
As a parent it's always difficult when your child is sick. You never want them to "not feel good" but it feels even worse when you know they are sick because of somethin you did to them (not just some icky bug floating around).
Did I mention that Cancer Sucks? My new mantra...
I did have some good conversations with a gentleman from the Insurance Commission today. He is helping me sort through some stuff and will help us navigate through an appeal. We also have some friends of friends with connections and we are hoping that may help our case. All a process! I have genuine faith that one way or another this will work in our favor. We will either get the insurance company to see it our way or we will raise the money (or find the money via other sources) to take care of the difference.
Kind of a good day to stay at home just because it's gloomy and there wouldn't be much else to do (except go to work and who wants to do that???)
That's it for me...
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