Mine: Thinking Outside of Yourself

When we were in the hospital, we received a gift basket from some of my extended family, which included this cutest little book called, Priceless Moments by Carol Lynn Pearson. It has a bunch of uplifting stories in it. I was touched by many of these stories, but have been thinking about one in particular this week. It's called "Mine".

"Mine"

We were on our way home after a fun evening with friends, and each of the children had a balloon I had given them. Emily's popped and she burst into tears. Johnny responded, "Good thing it wasn't mine!"

"Mine." Is anything just "mine"?

We seem to be tucked away nicely and privately in our own seperate skin, a warm little wall that protects us from everyone's problems, but our own. And from inside we can peer out and say, "Oh-children are starving in Africa. Good thing they're not mine!" Or we can say, "A house burned down just up the street this morning. Good thing it wasn't mine!"

But the borders are getting less and less clear...Scientists are proving these days that in very subtle ways every living thing is connected. Perhaps like what Jesus must have meant when he said, "Inasmuch as ye have done it unto the least of these, ye have done it unto me."

In some magical way that we will one day understand, whenever flowers are given or balloons are popped, they are mine.

We've had so many simple acts of service given to us lately. It has proven people's willingness to help bear our burdens, even though it might not be "their" problem or burden. For example, On Monday, Zach & Shantay and Greg & Hailey called to see if they could come over for Family Home Evening. They brought dinner (yummy pizza and breadsticks from Papa Murphy's) and a darling fruit spider (that I wish I would have taken a picture of). Then Jace picked a song to sing (I love to see the Temple) and called on someone for prayer. We ended by making these cute spider cupcakes.

We all had a great time & our kids loved having some new blood in the house.

It's just one of many things that people have done to reach out to us during this sometimes difficult time. Even though neither of these guys have kids of their own, they thought of ours. I think of the many people in our ward who willingly fasted in our behalf, even though some of them had no idea who we were. It reminds me of our neighborhood who all signed a cute welcome home poster for when we got back from the hospital to show that they cared or all of the people who finished pulling Super Satuday together for me, knowing that I would not have the time or focus to do it. Or those who took the time and effort to bring meals in or who prepared freezer meals so we can have something fixed in minutes. Or those who have come to watch Rylee so I can take Jace to speech therapy or preschool or so our family can still attend church on Sunday. Or all the cute care packages sent to our family. Or for cleaning our house, praying for us, calling to check in, running errands, etc. There have just been so many examples of people thinking and acting outside of themselves. Even when the problem isn't necessarily "theirs" it's "mine" everyday.

I think of times that I've had this attitude of "oh, well, it doesn't really affect me" before and I guess this is just a good lesson. With the season of giving coming up, remember all of those that may need something (and I don't mean us) and then be that person who sees or realizes that need. I cannot tell you the blessing and relief it is when you're on the other end(and this is the first time I've ever really been on this side), to feel, know and realize that others do care and they are willing to bear your burdens, in big or small and simple ways. There is comfort in knowing that you're not alone.

Well, that's probably enough of my motivational rant. I promise I'm not trying to get a gig as a motivational speaker, just sharing random thoughts of the journey. I have updates on Rylee that I'll post a little later.

Capture the Moment

So...this week I decided to have Rylee's pictures taken. My friend Katie Wells did them & she always does such an awesome job.

I had planned on doing some 18 month pictures and then after everthing happened, I was going back and forth about it- I didn't know if Rylee would feel up to it, didn't know how important it was to focus so much on the "before", etc.

Then this week came & as I've been noticing Rylee's hair thinning more and more each day, I started feeling the importance of NOW. So I called Katie right then to see if she could do them that day. I was much more emotional than I had anticipated I would be. I could barely get through the call. It's just that you always think you have all of this time. If not today, tomorrow, if not this week, next. And then something like this happens and it hits you like a ton of bricks that next week might be too late. I wasn't sure what another round of chemo would bring. And I suppose I wasn't quite ready to face that it might already be time.

I know I'm a little biased, but I think she is a doll. I'm so glad that I decided to capture this moment. She is so precious to me. No matter what happens- she will always be this beautiful to us. I ran across this quote recently, it says "All you have to do is look straight and see the road. And when you see it, don't sit looking at it- walk."(Ayn Rand). It just helped me realize that it is what it is. I don't have to be afraid of it or dwell on it or try to deny it, I just need to go forward, face it and try to gain something from the experience.

To see more pictures, go to http://katieportraits.blogspot.com/. After watching how busy Rylee is during the shoot, I'm always amazed that she can get such cute pictures.

Pretty Normal, Really

I think the one thing that even I am surprised about is really how normal most days are for us. I mean, I guess I should say according to our new normal. We definitely stay home more now as we're trying to keep Rylee free of any bugs, infections, fevers or anything else compromising to her immune system and aside from all the new medication and precautions we have to be careful about, most of our days at home are fairly normal.

I do laundry, cook, clean, the kids play, etc. Rylee certainly has her good days and bad days- at times she doesn't feel well at all. We mostly have to carry her around or hold her at moments like that. But I continue to be amazed at how she's able to bounce back a few days after treatment. It's a great blessing to still see her being her- happy, curious and cute! She's really started saying more words in these past few weeks & I love to hear her talk.

On Monday, Rylee started gaining enough strength to walk around again. Again, what a blessing! It really helps her when she's able to be independent. She's been walking since before 10 months, so she was pretty frustrated when she couldn't get around on her own.

Yesterday was a really good, normal day for her. I got her on video for any of you who have never met her in person, but I can't figure out how to post a video on here. Let me know if you know. I just wanted to show the here and now. I've noticed that when family or neighbors stop by or see her for the first time since she was diagnosed, everyone seems a little shocked at how "normal" she looks. We'll get comments like, "She still has her hair" or "She looks pretty much exactly the same" or "She looks really good- does she feel good?" Again, sometimes we're shocked about this too because we really didn't and don't know what to expect (we're only 2 weeks in)-it really is a day to day thing. Some days are certainly better than others in terms of how she feels. Today she was much less active than yesterday.

We have noticed side effects of the chemo kicking in little by little. Her hair has started to thin, she's gaining weight and eating way more than usual due to the steroids she's on and the steroids also make her a little temperamental and hard to please at times. After treatments, especially after the bone marrow and spinal punctures, she's in a lot more pain and it will take a few days for her to feel up to doing stuff again. I'm not sure what to expect as we get further into treatment. I don't know if it stays the same or gets harder or easier on their bodies. I guess we'll just follow Rhianna's, I mean Jordan Sparks advice and take it one step at a time. (I just heard it announced on the radio today.)

Well, tomorrow's our big day- heading to Salt Lake for another treatment. We got the bone marrow results back & unfortunately, she has to get another bone marrow test tomorrow. She is at an 11.4% blast level and she needed to be 5% or lower to not get it. We're just praying that she'll get to 5% or below by Day 28 (Oct. 30)- if not, she'll move into a higher risk category and have to start more intense treatments. Just pray that her current treatments will be effective. I don't think we could possibly handle any more "intense."

Good News!

We had our ultrasound today and found out that we are having a BOY! Which means I'm 3 for 3. I've always guessed right on what we're having. I feel like I've known it's a boy the whole pregnancy, so no big surprise.

The kids are really excited. When we said we'd be having a new brother, Jace started chanting Boys Rule! Boys Rule!. Then he went and gathered all the baby toys from the basement and brought them up to his room, because him & baby brother might share now. He also wanted to go get all of his old clothes and put them in his dresser today, but I made him hold off on that one for now.

Everything looks good though- every limbs in place, hearts strong and measuring a few days ahead of schedule. We really are excited to welcome a new baby into our family. He's due Feb. 23, but I'll most likely go a week early since I have scheduled C-sections.

It's just a nice reminder that life really does go on. We have a lot to look forward to and much to be grateful for.

No Sugar-Coating Cancer

We got back tonight from Rylee's second treatment. Today was a very hard day for me. It's just that no matter what way you look at it, there is just no sugar-coating cancer. It is devastating for those that have to endure it.

At clinic today, I saw what cancer is and realized that we are now part of a new club. The cancer Club. A lot of different families with a lot of different circumstances in a lot of different phases of Leukemia. Some of us were at the beginning of our road, some were a few months in and others had been battling this for years. We sat next to an 18 year old hispanic girl named Ashley who was a senior in high school and was diagnosed 3 months ago with ALL. She's into her second phase & seems to have it all figured out. She's been struggling to keep up in her AP classes while battling Leukemia. She's the 3rd of six kids in her family and it was her influence and situation that was a deciding factor for her older brother to serve a mission. She hasn't yet lost her hair, but you can see that it's thinning as she had it pulled up into a pony tail. She left for a minute to go talk to another patient that she once met during a hospital stay. That girl was 8 months in & was wearing a darling and stylish hat. Her hair is gone & Ashley commented that it's only a matter of time until that's her. She knows what's to come. And I realized that we'll be where she is around Christmas time.

As Rylee was getting her Chemo, I asked Ashley what it felt like. I almost wished that I hadn't asked. She said it's so hard for her to see little kids have to go through this, because they just don't understand the why. It is encouraging when you see a room full of strong and resilient children. I admire their courage and long-suffering, yet it is so disheartening that they have to spend so much of their childhood in and out of hospitals, going from one procedure to the next and exposing their bodies to such intense medicines.

I just feel so helpless. We're doing all that we can do to rid this from Rylee's body, yet you feel so bad for having her go through this. I just wish I could take this on for her. The reality of what's ahead really set in today. There is no quick fix. It is a long process with ups and downs. We keep hoping for the best, yet there are moments of discouragment. Her ANC level is still at 0%, her platelet level was low, so she had to get a transfusion today and then they had to put her under for the spinal tap and bone marrow testing. We don't know the results yet, but the Dr. said that it looked like the Leukemia cells are still in the bone marrow and that we'll probably have to do that procedure again next week.

Rylee's spirit amazes me though. Despite everything that going on in her little body, she is still so sweet and is happy and loving. She's still got her spunk, even when she doesn't feel all that great. I'll just look at her and wonder how something so deadly could possibly be inside such a beautiful little person. She's still eating and sleeping well and so far seems to be adjusting to all the medication without too extreme of side affects. Her bones and joints hurt so bad right now that she isn't able to walk- even crawling seems to be uncomfortable to her, especially after treatment. It's difficult to see her regress. They say it will come back though. We were able to stop administering the antibiotic for now, so that relieves some of the medicines. Honestly though, I cannot tell you the sweet and simple blessing it is to go into her room each night and just hear her breath in and breath out. That's what keeps me going.

We continue to receive so many nice care packages. Jace can't decide if it's Christmas or his & Rylee's birthdays everyday. Bless his sweet innocence that doesn't quite understand what's happening to his sister. He came with us today & thought the hospital was great- he got pancakes, donuts and a root beer at the cafeteria, saw a big dog roaming the hospital, made several art projects, played, watched TV and brightened Rylee's day. What a good big brother!

We're Home...And Off Again

My phone rang constantly today, so I decided that it was time for a post to let everyone know that all is well. We were able to come home on Monday. We were discharged at about noon. So far, Rylee has been doing pretty good. I think she's just so glad to be home! No fevers and nothing major has happened since being home. She's gotten some thrush and a diaper rash, probably side effects of the antibiotic, but we got a prescription for it, so what's another medicine at this point.

We've had a pretty intense week with medication and getting trained by a home health nurse on how to administer the antibiotic through her central line. She has to have the antibiotic every 8 hours, so at 7 a.m, 3 p.m. and 11 p.m. we have to hook her all up and let it run through. It takes about 20 minutes each time. And we have to make sure everything stays clean & sterile. Then she has two to three oral medications, twice a day that we have to give her. On Monday night, I was a little overwhelmed, but it's getting easier with time. Being nurse is totally different than just being mom. I just decided to get a notebook, write the day of the week on it and write down exactly what I need to do that day to take care of her needs. The next day is a new day & I'll worry about it when it comes. Some of the meds she only takes Mon & Tues and so forth, so it's hard to keep everything straight. Hard to believe that before long, this will just feel normal to me.

We came home to a clean welcome. Some of my sisters, mom and a good friend came in and cleaned and disinfected our whole house for us. We also had a freezer full of quick prepare meals that Justin's sister & sis-in-law prepared for us, the ward has provided dinners the last few nights and Jace's aunts/cousins decorated his room & left him all sorts of fun gifts, which really made him feel special.

I cannot explain the out-pouring of love that we have received. We have so many people praying for us, attending the temple, serving and doing any and all that they can to help us. So many meals, offers, gifts, well-wishes and words of encouragement have come our way. It just makes us grateful for all the blessings in our lives.

Something that Elder Quentin Cook said in conference keeps sticking out to me. He said, "Regardless of our trials, with the abundance we have today, we would be ungrateful if we did not appreciate our blessings." I just keep thinking of the family & friends we've been blessed with, modern medicine, skilled Dr.'s, our great marriage, faith promoting experiences, our testimonies & knowledge of the gospel, having our beautiful kids and definitely insurance!(One ambulance ride was nearly $900 and we had 2. Wonder how much Life-Flight is?) We will get through this!

We are off to Salt Lake first thing in the morning. Rylee will receive another chemo treatment, they'll check her blood cell levels and she'll be put under for another bone marrow test and spinal puncture. We are hoping and praying that her treatment has been effective so far and hope that the Leukemia cells will have decreased and that they won't have to intensify her treatment. Also hope that her ANC level have gone up, so we don't have to be on such high alert with her immune system. She is wanting to go outside and take a walk so bad. Nothing is worse than being/feeling couped up! She's her mama's daughter in that way. Justin took the kids on a little drive tonight to get them out and about.

Tomorrow will give us a good idea of where we are and where we need to go. Thanks again to everyone who is pulling for our little family!

To Include In Prayers...

Today Rylee had a little bit of a scare- she spiked a really high fever, which is detrimental to her condition right now. Bascially she has an ANC count of 0%, which means that she doesn't have much of an immune system to fight anything off. This is all part of the many changes we'll have in these upcoming months and years- especially with cold & flu season right around the corner. We have to be so careful when her counts are low- a fever could put her back in to the hospital.

She started getting hot, then hotter and it just kept climbing. She got up to about 105 degrees, which for her, we have to be on guard if it gets to 100.3. Our Bishop & wife were at the hospital at the time because he was picking Jus up for the Priesthood session, so they gave her a blessing before they left.

It kept climbing & I was getting a little panicked as they continually kept calling people in to come look at her & evaluate her. She had to get hooked back up to a bunch of the monitors and we had ice packs on her & run some stuff through her IV. It was a little tense there for awhile, but the fever finally broke & after awhile, she was up & alert again.

As you can see this can be a roller coaster. Our nurse said that she didn't want to burst our bubble, but said that if she has anything like this come up tomorrow, then we won't be coming home yet.

So...I know there are a lot of prayers being said on our behalf and I just got thinking about some specific things we need to pray for right now. 1. For her ANC counts to go up so that she can fight stuff off- it's going to be tough when we get home to deal with this especially. When her levels are at zero or even low, it pretty much means no playgroups, nursery, church, grocery stores, malls, large crowds, sick people coming over, we have to avoid fast food and any leftovers or anything that bacteria can grow on quickly if food is left out etc. 2. Also just for her health in general. This will be challenging in cold & flu season. Our goal is that she doesn't get any infection, fever, cold anything- it could really set back her progress. 3. We also ask you to pray that her body will be able to withstand the treatments and that her side affects might be minimal. 4. Just for the strength of our family and ability to accept the changes and challenges ahead.

As we are nearing being able to go home, I am getting a little nervous just about having this all in our hands, especially when we live a distance from care here.

Thanks to all!

A Good Day

Yesterday was a really good day for us. It started out a little hard because Rylee wasn't feeling well and was throwing up as a reaction from the Anesthesia she had during surgery. She also didn't have an appetite at all, so since she couldn't eat anything before surgery the day before, it had been quite awhile since she had anything to fill her tummy.

They gave her some anti-nausea medicine and by mid-afternoon, she was back to her old self again. The coloring has returned to her face, which amazes us that we didn't realize just how pale she had been. Her lips are red again!

Rylee spent most of the day up and alert and was playing with all of her new gifts. Care Bears, coloring books, dolls, books, bears and monkeys! She's gotten the mother load. She was able to unhook from some of her monitors and they let her leave the room (with a little face mask) to go for a little walk to the Oncology clinic where she'll receive chemotherapy. They have one of those little push cars (that we have at home as well), so she and her little Care Bear went for a drive around the hospital. She really enjoyed it. She was happy and was talking, smiling and waving to all the nurses today.

A volunteer also brought in this big fluffy black dog and that really brightened her day. She kept looking and showing people the picture of the dog on our camera. It really is amazing how such small and simple things make a difference.

We spent a lot of the day getting educated on more stuff. It seriously feels like we've been to nursing school and back this week. The quickest degree I've ever received! We also got her treatment schedule, which basically means that we'll give her two different medicines twice a day at home and then every Thursday we'll make the trek to SLC for chemo treatments, bone marrow and blood testing. It will be pretty intense these first few months, but we'll get through it.

We got the results from the spinal tap they did during surgery and no Leukemia cells were found in the spinal fluid, which is good news. All things considered, we have a great diagnosis so far. She is in the standard range and everything is looking good in terms of treatment. It's just the process of it that will be difficult. I'm sure we'll have good days and bad days.

We are really just so appreciative of everyone who has supported us through this. We know that many prayers have been offered on our behalf, our ward held a ward fast yesterday (and it was our best day yet!), our names have been put in several temples and so many well wishes, gifts and visitors have came our way. We will be forever grateful for all of the love and encouragement we have received through these hard days.

If everything keeps going our way, it's looking like we'll be able to leave for home sometime on Sunday. They have to give her a chemo medicine into her muscle if count levels are up, no fever and if everything else looks good. They keep us there for awhile to make sure no adverse reaction happens, but then we'll be free to go. There really is no place like home!

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