Day One: Rylee's Progress

Hello All, Today we had a pretty full day. This will forever be considered our 'Day One' because it was the first day of Chemo treatment for Rylee. Pretty much everything else for the next two plus years will follow suit with this day. (So don't ask me to do anything on Thursdays.)

The biggest things about today were that Rylee's red blood cell level was raised due to the transfusions (went from a 10 to a 29!) It has and will drop again as we go along (as an effect of the chemo) and more transfusions will most likely be necessary. They also did two platelet transfusions and that level is up as well.

She had a three-purpose surgery today, which went well. They inserted her central catheter line, which will become a permanent fixture. It is inserted into the vein in her chest and has a cord thing that comes out of it. This is where they will administer chemo through and also take blood from for testing. It will definitely take some getting used to- we have to be very careful with it & it has to be cared for daily using a sterile technique. Daily baths will now become somewhat of a chore because you're not supposed to get it wet. It has a dressing that goes over it, but pretty much she'll just have a little 'dangle' under her shirt.

In surgery they also did a spinal tap to see if any Leukemia cells have entered into the spinal fluid and also administered chemo into the spine to prevent any bad cells from forming there. They also tested the bone marrow.

We haven't heard all of the results from surgery yet, but the surgery itself went well. Later on tonight, they gave Rylee her first treatment of Chemo. It's a little different than some of you might expect- it's pretty much just an injection into the IV. I always invisioned chemo a little different than that. One of the medications is actually a steroid and that is given orally, which I'll give to her twice a day at home.

It's been a pretty rough night tonight because Rylee's been in a bit of pain from the surgery. Tomorrow we'll probably also see a lot of discomfort because of the chemo tonight. It truly is hard to see her go through this. She's getting tired of everyone poking and prodding at her and frankly, so am I. There is a wide range of emotions involved in this and today it was a lot of frustration.

It's hard to describe exactly what it's like. There is a lot of waiting around at times- like for test results, medication, etc. and at other times, it's very full- staff constantly in and out and people trying to educate us on what to expect, what's going to happen next, etc. For instance this morning we had the nurse about every other minute, the tech, the electrician (because the heating/cooling is off in our room), the Oncologist, the Oncologist Resident, housekeeping, the social worker mixed with a few visitors.

We have received many phone calls (most of which went to voicemail today), a flood of emails, packages, gifts, visitors and so many offers to help. We really do appreciate all of your prayers and support. As of right now, there's not much that anyone can do. We feel just as helpless most of the time. We have our car down here, one of my sisters lives in Salt Lake, so we're able to stay at her house if we need a break, a good nights rest or a shower and our family is looking after Jace (who we really miss & think about his well-being often- this is going to be hard for him too). Ocassionally a need will arise and we'll ask when we need it.

Tonight as I was rocking Rylee, I started thinking about random acts of service as I looked down and noticed the little receiving blanket that we've had her cuddled up in. My first thought was that some Relief Society somewhere probably did a service project & now we are the recipients of their service. We didn't really pack many blankets and they get bloody and stained and it really is nice they have some soft little blankets to use. So.. since I don't really know what anyone can do for us right now, do some random act of service this week, you'll never know when or who it might benefit!

We're pushing along and keep hoping for the best. Thanks again for all the love!

Justin & Natalie