July 25

Things around here have been busy hence the quietness on the blog :). Because of the delay in Evelyn's schedule from a few weeks ago our clinic days have been all over the place so that we are able to still go on holidays when we scheduled. Evelyn's treatment works in three week rotations - Week 1, Week 2, Week 3 and then starting over again. This is what gives us a 'schedule' and we can determine when steroid week is (Week 1) and usually what her blood counts are going to be. It's important that Evelyn is on a Week 3 when we go on holidays (her counts are usually good, she isn't on steroids and that's her week break from chemo at bedtime). Because of the delay it worked out that Evelyn was on a Week 2 on our holidays - this is her low immunity week. Our amazing team at Mac was able to rearrange her schedule so she is on a Week 3 for holidays and we hope to still go if Evelyn's blood counts stay up and she stays healthy.
An exciting little accomplishment has happened a few weeks ago - Evelyn was officially 'discharged' from her endocrinologist (blood sugar) doctor. Evelyn's blood sugar is still low but it has been stable for about five weeks now, even through her low immunity weeks. This meant that our doctor no longer needed to evaluate her every week at clinic and we can slowing wean her off the finger pokes every morning. So exciting! :). Of course we always have to watch for signs of low blood sugar and may have to do a poke here or there but we can take a little breather in that department :).

 

Always helping

 

How do you keep a steroid baby distracted while you wait an hour and a half for prescriptions? Dora bandaids every time :)

 

Treat box selection and sharing with the sister

 

 

As mentioned in previous posts Evelyn has a cavity in one of her teeth. About 6 months ago we went to our family dentist to get it checked - they didn't see any reason to do anything about it since it wasn't bothering her and she would probably have to be sedated to get it filled. A couple weeks ago the cavity started to turn black and our clinic doctor informed us that it needed to get taken care of - it's a source of infection and since Evelyn is at a higher risk it needed to be filled. The clinic nurses suggested we try to get it done by our family dentist since the waiting list would be a lot shorter then if she got it done at Mac. Our dentist does not do sedation but after my many questions they informed me that they would probably be able to fill it with just the gas. I had my doubts since Evelyn is only two and needed to be on steroids since that's when her blood counts were the highest (and at the lowest risk for infection). We made the appointment and went with an open mind. Considering Evelyn was on steroids and had been fasting (let me tell you - not an easy feat for a steroid baby) she did really well overall. We were able to get her laying down (on my lap) and the dentist got a good look at her tooth. Unfortunately she did not like the idea of the mask over her nose and would not keep it on - we left with an 'A' for effort and an appointment to see another local dentist who does sedation. In clinic the next week we discussed this with our nurse and came to the conclusion that it was best to wait for an appointment with the dentist at Mac since he is familiar with working on children with cancer and can access her charts if necessary. We have an appointment for a consultation and will make an appointment for the filling following that.

This past steroid round cravings - sliced black olives and spaghetti 

 

Her beads updated

 

 

 

Lindsey and Stephen

 

Psalm 46:10a "He says, "Be still, and know that I am God."