checking my email over and over

Last Wednesday we got to go to City Creek, have breakfast at Kneaders, and see Santa and Mrs. Claus. Thank you Millies!  Mark took Annie home so he could work and she could nap. (being self employed is very challenging but has its benefits). We went to the hospital right after that to check off all the boxes so Ruby can be enrolled in the study for entrectinib.  I thought it would take maybe and hour and a half...but it was more like 3 hours. There were waves of boredom, but I was so glad Siri and Jane were there to entertain each other and keep Ruby occupied.

She had labs drawn, ECG, eye test, urine sample, regular physical exam, and I spent lots o time going over paperwork and details of the study.  We'd been planning on starting the week before Christmas, but I got an email Friday night saying the drug will be in the mail on Monday and she could start this Tuesday. Plans foiled!  I've emailed her dr a couple times this weekend and have checked my inbox too many times, awaiting a reply. I realize its the weekend, but I continue to check. Yes she has cancer, but she also has a preschool program, party, and life plans that we are hoping to be a part of.  Sometimes I feel a little worn out of cancer-life, but we really have had the best end of the deal you could ask for! So to hope she can still all these school and social things is normal for us so far.  Very thankful.

The drug is taken orally daily, and one cycle is 28 days. The first day the drug is taken you have to be at the hospital to be monitored. They do blood samples at multiple times, urine test, vitals, etc. We'll probably be there 8ish hours I'd guess, then go back the next day for another blood draw at hour 24. Then once a week for the next 3 weeks. Again the first day of the second cycle you are monitored most of the day.  I imagine we'll try to do 3 cycles and then do scans and see where we go from there. Common side effects are: fatigue, nausea, loss of taste or bad taste in child's mouth, nausea, tingling/tickling/prickling/burning sensation in skin, vomiting, pain in joint/muscles.  There's a whole long list of 'less likely' side effects.

I assume that by tomorrow morning we'll know if we're going to start this Tuesday or be able to wait until the next.

We had a great weekend-Christmas festivities with our church, swimming as a family (Annie loved it!), and enjoying each day as we follow #LightTheWorld.

I burned some food on the stove earlier today so it stinks in the kitchen still, Ruby and Annie were up in the night so I'm a tired bear, overate at dinner thus feeling chubby and  the house is so messy within 24 hours of cleaning it. Sounds like its time for bed to recharge for a new day tomorrow!

church today

girls with our friend Justin

singing and dancing while they made some black beans

ward Christmas breakfast

last Wednesdays visit

brain MRI a week ago, results came back clear