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

The First 24

Well, we made it through the first 24 hours post diagnosis. For those of you who aren't yet aware, Rylee was diagnosed with Leukemia last night. I have already sent an email around that gives a lot of the details and I don't have much time, so I won't repeat.

Just wanted a new update on the blog to let everyone know that we're busy at Primary Children's. It was confirmed today that she has the ALL form of Leukemia, which is apparently the one that you want. It's the most common and it has a high success rate.

Tomorrow will be a big surgery day for Rylee. They will do a spinal tap, bone marrow testing and will input the central catheter line, which will be a somewhat permanent fixture for awhile- this is where they input the chemo and take blood etc. They have been transfusing blood all day and still have more to go. Her red blood cells and platelets are still low. A platelet transfusion is scheduled for 8 a.m.

They also did an EKG on her heart today and we have yet to hear the results from that. That's about all the developments we have so far. If for nothing else than journaling purposes for our family, I would like to use the blog as a spot to write all this down. It's a whirlwind to say the least and I'm sure we'll want record of how it all went down later on.

Some Sad News

Dear Friends & Family,

As some of you are already aware, last night we received some unfortunate news. Our sweet little Rylee was diagnosed with Leukemia. She will be 18 months this Friday.

We were life flighted to Primary Children's last night and have been preoccupied with tests, blood work and trying to learn more about the new journey ahead for us.

Since it is difficult discussing things over the phone, we decided to do an email to let everyone in on what happened, what we know so far, etc.

Rylee hasn't quite been herself for about a month or so now. It's mostly been typical child illnesses: diaherra, fever, cold, etc. I took her to the Dr. about 2 weeks ago and was told by the P.A. that she had a left ear infection and was sent home with an antibiotic. The antibiotic didn't seem to be helping her & when we returned from Greg's wedding in Portland, she didn't look so well and my mom said that she had ran a fever, etc. Yesterday I took her back in to have the Dr. look at her & he agreed that she looked very pale and ordered some blood work at the hospital.

A couple of hours after the blood was tested, we received a call from our Dr. saying that her white blood cell count was high and the red blood cell count was way low (hers is at a 12, normal is 35). Her plateletts are also low. Her heart was over-compensating to help her body make up for what it's not doing naturally. Therefore, it was necessary to admit her to the E.R. immediately and for the Oncologist/ Hemotologist to take a closer look at her blood. He then confirmed that it looked like Leukemia.

At this point, they have started doing a blood transfusion to get her red blood cell level higher so that she is able to do additional testing, which will include a spinal tap and bone marrow testing. We are also waiting on the results that will indicate what kind of Leukemia she has specifically, which will tell us more about what kind of treatment will be necessary. At this point, we know that Chemo will be necessary and that full treatment/remission could be as much as a two year process or more, but most intense in the first six months.

It is breaking our heart to see her have to go through this, but she has been so good! Right now she is resting and Jus & I are just trying to take it all in. We have several concerns and a lot of details to work out still. For now, we know it will be necessary to be in the hospital for about 5 days and then we'll most likely do treatment with outpatient care- we may do it here or there could be a possibility that we can do some in Rexburg.

We know of your concern and prayers on our behalf and appreciate all of your support. We both have our cell phones, but we are also meeting with several people, so it may not be possible to get to calls. Visitors are welcome, but in limited amounts and your health must be good. I wouldn't recommend children visiting right now. Please call before you visit, we have a security code and some specifics for visitations.

This is certainly not what we expected, but we are doing our best to trust in the Lord and know that things will all work out according to his plan. The best thing the Dr.'s have said is that Leukemia is certainly curable and treatable, which gives us a lot of hope.

I'll try to check in on email here & there- they have access for parents close to the room.

Keep us in your prayer,

Nat & Justin

Long Drive...Nice Wedding

Just got back in town from Greg's wedding in Portland. Had a nice 9 hour drive all the way home today. Nothing that 2 movies, The Friend, The Ensign, a nap and a few stops can't get you through. Pictures of our trip to come.

Yesterday, Today and Tomorrow

Yesterday: I saw two BOYS (yes boys) making out in the Picketts Bambino parking lot. Talk about a double take. And I'm positive in what I saw- they looked at me as if I had just "outed" them.

Today: I still have dishes in my sink from Sunday's dinner. (Just in case any of you questioned my "perfection" Ha, ha)

Tomorrow: I wonder what will come my way.

Sometimes life is unexpected. You'd never guess I'd see such a thing in Rigby, ID. My, my how times have changed. You'd never think the dishes would have piled up- I had a nearly spotless house this weekend. So tomorrow...we'll just take it as it comes I guess.

The Constancy Of Change

If there is one thing you can count on....it's change. Change is certainly inevitable, although sometimes change comes in bigger doses than at other times. Growing up I experienced relatively few changes in my life. I lived in the same house, same town, had basically the same friends from grade school on and never went through any major transitions. I find that life in general changes much more now that I'm an adult.

It all started this summer. First, a couple of my friends announce that they are moving. What? Alish all the way off to a place we've never even heard of- Sierra Vista, AZ. And then Kenzi drops the bombs that they'll be moving to Twin Falls. This one was a little tough cuz she has totally sustained me since we've moved back to Idaho. She's been my friend since 2nd grade & it was so nice to move home to a friend- we worked out together, our kids went to playgroup together and she taught me how to text! Needless to say, she made my move back to Idaho easier to cope with. And now she's left me here all alone! And I haven't worked out once since she left! I miss her.

Then, one of the biggest surprises hit me. I found out I'm expecting baby #3! (This is my official announcement for those of you who don't already know.) And changes kicked in immediately- morning sickness, exhaustion, nausea, body changes, etc. This was not expected either, so trying to figure out how I'm going to manage 3 kids ages 4 and under (especially since Rylee will still be under 2) has been a change in and of itself. And did I mention I'm due Feb. 23, which will be our second "tax season" child and a C-Section recovery. So..we've started shopping for a bigger car, thinking through how to do room arrangements and so forth.

A few months ago, our enormous ward of 700 finally split and we are now in a newly formed ward. With this brought leaving friends, a new building, new ward leadership and a new calling. I am now the Enrichment Leader and have been switching gears- trying to get Super Saturday organized for next month. However, we're still dealing with the big ward thing- we still have close to 400 members, 5 nurseries, 3 sunbeam classes and a Sunday school that fills the whole chaple. The church is true in Rexburg in case you haven't heard!

Next, the baby of our family, Allison, got married this August. She was the final wedding for our family & it just made me think about how much our family has changed over the years with each new addition. My parents now have 19 grandchildren and our little family of 9 has now exploded into like 35 members. (Go to http://studiockchantrikeelephotography.blogspot.com/ under Aug. 13 to view photos of the wedding.) It was a very special occasion to have all of my siblings & spouses in the temple for the wedding. It makes me so proud of our good parents- I'm sure it wasn't easy for them to raise all of us, but what a sweet reward that must have been for them. I really do have a great family! And more changes are ahead for our family too. My parents are planning on going on a mission at the first of next year, which will be really different to have them gone. They are finally back to their own life now that all of us are finally on our own.

And finally, I am all but weeping right now. Jace just left with our car pool for his first day of preschool. I'm just not sure if the weeping is out of sadness or joy to tell you the truth. As my little cling-on, it makes me very happy to see him gain his confidence and go have something of his own. He was so excited this morning. On the other hand, it's just another reminder of how quickly they grow and how fast things change. Luckily Rylee's nap is at the same time that Jace is at school, so I'm basically having my first taste of freedom in about 4 years, wondering what to do with myself. Now that's a change! And of course, I choose to blog- go figure.

Like I said, change is inevitable! It can be good sometimes, it can be challenging sometimes, but it's always constant. And if not, life would be boring. Just trying to embrace this season of change and prepare myself for the next- like Rylee entering nursery next month (yay!), Jus entering tax season and me getting used to being completely outnumbered with the arrival of the new baby.

Jace's Bowling Birthday Bash

Jace's birthday was a hit! Although he wanted to have a neighborhood friends party, I decided that since it was over Labor Day weekend and we'd have a lot of family in town, that we'd do a family celebration instead. Here's a look at our fun day!

Decorations: Little things like this are not overlooked by Jace. I put together a picture collage, happy birthday signs and featured him in our kitchen tray. He was pleasantly surprised when he woke up- wondering who had done all this. (since I was still asleep). He gets so proud about stuff like this & loves to show it off.

The Party: We decided on bowling for the party since we have such big families and wanted something that all ages would enjoy. Teton Lanes does such a good job for b-day parties. They give you free shoe rentals and then they set up a table with balloons, table settings for the cake etc. Then they put a Happy Birthday Jace up on the bowling screen, played Happy B-day song over the loud speakers and gave him the classic bowling pin. Now we have two since we also did this for Justin's b-day this year.

Jace with his pin.

A Special Day: Jace was so happy that so many of his cousins could come and celebrate with him. He really loves his cousins & has a lot of fun with them.

1st pic: Jace & Josh(2 years apart, but Jace loves playing with Josh), 2nd pic: Jace with Payton-nice shoes!, 3rd pic: The bowling crew

What a Celebration: Blowing out his 4 candles, showing off his many nice gifts. We're so glad for all who came & shared in his special day.

Hard to believe that its already been 4 years. Where does the time go?