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."

 

 

July 1

On June 19th Evelyn was scheduled for her routine lumbar puncture and chemo. Steve was able to go with me so we were all up with the sun and at the hospital by 7:30. After fasting all night Evelyn's stomach was quite upset - she ended up throwing up on the car ride there. Once she got out of the van and into clinic she perked up.

 

Since clinic was busy that day and we were first on the procedure list Evelyn got her IV hooked up while we waited on her blood counts. Unfortunately it was determined that her counts were too low (she was neutrapenic) to go ahead with the lumbar puncture. This came as a surprise because Evelyn had been feeling well and been in a great mood - it all depends on those blood counts. When Evelyn is neutrapenic this means she is at the highest risk for infection/colds/flus and usually procedures aren't done to eliminate that risk of infection. Of course we understood the reasoning but couldn't help but feel disappointed - this meant the lumbar puncture, chemo and steroids all had to be pushed until those counts came back up - treatment was put on hold for the weekend. This was the first time that treatment has been delayed - we are incredibly thankful how well Evelyn has been, it's such a blessing she has stayed healthy and on schedule. We focused on this as we headed home to wait despite the discouraging news. Moments like these humble us, reminding us where to put our focus despite the change of plans, knowing He is in control. It also emphasizes how fragile Evelyn's

immune system is and how careful we have to be to protect that. Since Evelyn's blood counts were just below what they needed to be the doctor told us to come back on Tuesday to try again instead of Thursday. If her counts were good her schedule only shifted a couple days instead of a whole week - this way her schedule is able to be slowly shifted back on track instead of pushed a whole week (adding a week at the end of treatment). We spent the weekend at home with limited visitors and no going out in public to reduce any risk of her catching anything and delaying treatment again. Since steroid weeks tip our life off balance we have planned our summer vacations around those weeks; along with not wanting to add any extra weeks to treatment, it was vital that treatment went ahead on Tuesday. We said a lot of prayers, put our trust in the Lord no matter the outcome and waited for Tuesday.
Tuesday came and back to the hospital we went. Our prayers were answered and those counts were up! Evelyn got hooked up to her IV and we waited our turn.

 

 

A Child Life worker was in the waiting area this time - she was a great distraction for Evelyn while we waited to go in.

 

 

Picking from the treat box

 

 

The lumbar puncture went smooth, we got our prescriptions filled and back home we went.

Steroids have come and gone this past week; we are saying goodbye to Evel and hello to our Evelyn :).

 

 

 

Lindsey and Stephen

 

Deut 8:2-3 "And you shall remember the whole way that the LORD your God has led you these forty years in the wilderness, that he might humble you, testing you to know what was in your heart, whether you would keep his commandments or not. And he humbled you and let you hunger and fed you with manna, which you did not know, nor did your fathers know, that he might make you know that man does not live by bread alone, but man lives by every word that comes from the mouth of the LORD."