A Rylee Recap- November

Before November becomes too much of a distant memory for me, I just wanted to journal a little bit about Rylee's past month of treatment.

{This picture is not a current one, it was taken in July, but I've been terrible at taking any pictures lately and I hate it when posts have no pictures.}

This past month, Rylee has been in the second phase of treatment for ALL. It's called Standard Consolidation and lasts 4 weeks (28 days). We've been able to do all of her treatments here in Rexburg this month, which has been such a blessing to not have to travel on top of everything else. This is what it consisted of- we finish it up tomorrow!

1- She's had 3 spinal punctures (once a week). These are done up at the hospital. Basically it's a procedure where the Oncologist pokes her lower back and takes a sample of her spinal fluid, which is then sent off to a lab to check for any signs of Leukemia cells. Then they inject a chemo drug called Intrathecal Methotrexate into the spinal fluid for prevention purposes. I know it sounds complicated, but she's under anesthesia for the procedure, which actually only takes about 20 minutes or so. The whole appointment takes about 2 hours though by the time they prep her, do vitals a hundred times and then once she comes out of it etc.

[This has been much easier to do locally though because she gets the first appointment of the day (we have to be at the hospital by 6:30 a.m.), which is considerably easier than our 3 p.m. appointments at Primary Children's. Because she can't eat or drink anything after midnight due to the anesthesia (which was really more like 6:00 p.m. when we have dinner) it was torture trying to keep a hungry 18 month old content during a 3.5 hour drive, clinic that takes a couple hours and sometimes even through a 2+ hour blood transfusion all while on steroids that made her hungrier than a grown man. Glad that's over!]

2- She only had to have one IV push of the chemo drug Vincristine this month. {She used to get this weekly} This is given through her central line in a syringe. It's done at the Dr.'s office and only takes a few minutes.

3- Had her blood drawn each week to check counts and ANC levels. All of her counts have been pretty good this month. Her white blood cell count is a little low, but that's typical for her condition. Her Hematocrit is back up in the normal range {this was the count that was very scary at diagnosis and why she had to get so many blood transfusions- it was at a 10 and is now up to 37.5%. Normal range is between 30-40%.} ANC (absolute neutrophil [or immune] count) level has been up. Initially this was at 0% and she's now up to about 1.2%. The Dr. says she was at a level 4, which means she really had no ability to fight stuff off and now she's at about a level 2. He hopes to keep her right in this range throughout treatment.

It affects us less since the ANC count has gone up. We can now take her out and about with us more. We've been taking her to church and although nursery was not recommended, I've been taking her in for the music time and she just loves to interact with the kids. We still have to be careful to keep her away from sick people and in crowds due to cold & flu season, but it feel much more free now that she doesn't always have to stay behind.

4- Rylee's been on an oral medication called Mercaptopurine that we had to give to her once a day. She also takes a med called Septra twice a day every Mon. and Tues.

5- She has not lost much more hair. I trimmed up her bangs and the back (growing a small tail ), but I'm still able to do little piggies in the back or a clip or something up front. Little bits fall out when I combing it, but so far, it's not too bad. I'm pretty sure that in another month or two it will fall out. She'll be getting more chemo in the coming months- I'm expecting it to have some effect.

Besides a visit from the home health nurse once a week, that's about it for this month. It was definitely less intense than the first month. And thank goodness it didn't require steroids! They will return later, so I'm appreciating it when we don't have them. I just could not be more grateful for all the prayers on our behalf. Rylee's tolerance for treatment has been remarkable and so far, there is no sign of relapse! Please continue to pray for her- it's working!

We've been given her treatment plan for the next course, which she'll start on Monday. It lasts about 8 weeks (56 days) and will go through right around Feb. 2. In the upcoming months, she'll be given two different chemo drugs (IV push) every 10 days. One of the chemo drugs will increase in dosage each week. Then she'll just have one spinal puncture. We are then told that she'll have about a two week break and then another "intense" course will begin. This is what one Dr. referred to as the "One, two punch." Apparently it's the last hard course before a patient enters the maintenance phase.

So...I can see the light.

Just Around the Corner...

Our outside lights are up.

Tree is up, but not yet decorated.

The first present is wrapped.

It's beginning to look a lot like Christmas!

So excited to get it all done, but I'll enjoy Thanksgiving tomorrow first.

The Trip Not Taken

This morning at approx. 8 a.m. we were supposed to board a plane to Israel. It's a trip that's been in the works for a few years now. Tickets had been bought, babysitters had been lined up, time off was arranged and we were really looking forward to going. My parents and all of my siblings + spouses are on their way to the Holy Land as I speak. It would have been our first international trip, the first stamp on our passport and is said to be a "life changing" experience.

We opted not to go when Rylee was diagnosed with Leukemia. I guess you could say there were just too many details and concerns to leave behind. So...our tickets were sold, Justin's family got off the hook with taking our kids on for 10 days and our passports sit in our cupboard- unstamped. I guess we got a different kind of "life changing" experience instead.

I'm not feeling sorry for myself- that's not my intention at all. So please don't pity me. We actually feel more relieved about staying- it would have been hard to really relax and enjoy ourselves if we would have gone anyway. It's just a trip. Sometimes sacrifices have to made as parents.

You are the trip I did not take.
You are the pearls I cannot buy
You are my blue Italian Lake
You are my piece of foreign sky.

{Unknown}

So...if you've ever had to miss out on something, for whatever reason, here's another quote I like that keeps it in perspective.

" For everything you have missed, you have gained something else, and for everything you gain, you lose something else."

{Ralph Waldo Emerson}

Today

Today...

I'm loving the last few rainy days. It's given me a chance to dig into some organization projects. Finally getting to my scrapbook room a little. Getting on top of laundry, going through clothes, finding a place for everything. I love to get things organized! I hope to get through all of our new medical paper work today. Pretty sure it doesn't belong in a big heap on the desk.

Also...

Is anyone else getting so excited for Christmas? I can't wait. I've been getting the urge to start decorating, but making myself hold off a few weeks. Maybe after Thanksgiving.

And..

Just curious. How long does everyone hold on to bath towels for? I swear my mom never got rid of a towel growing up, but I've been wondering if it might be time to switch a few out. Almost that feeling of never quite seeming clean, even though I wash them regularly and have even started adding some Clorox into the wash. We got most of our towels we use for our wedding, about 6.5 years ago. Is there a standard on this?

Opposition in All Things

This summer, we put our yard in ("we" really means Justin). Hydro seed was basically the last step- the one I couldn't wait for- Grass! I wanted the instant gratification of sod, but settled for the more economical choice of hydro seed. Weeks went by and we finally started to see our small little budding grass. Then came the weeds & still sit the sprouting weeds amongst our little baby grass. Whenever I look out our window, I think about opposition. Nice that we have grass, not so nice that we have the weeds in the grass.

A few weeks ago, I was on my way home from the grocery store. Long day, ready to get home & get on to the next thing. But what stands in my way? A long train going down the track, blocking the road home. Glad for means of transport, not so glad for the delays.

This weekend, opposition proved itself once again. Rylee and her cousin were playing. Not quite sure how or what happened, but our little cousin somehow managed to break Rylee's central line. Rylee came out to alert me, cousin came out to say she pulled Rylee's "tag" off. I lift up her shirt to a bloody muddle, grabbed the emergency clamp, made a few flustered phone calls and rushed out the door to the E.R. (FYI: the central line is essentially her life-line. It's connected to her heart, everything goes in and out of this line- blood draws, transfusions, chemo, anesthesia, etc.)

Two wasted hours at Madison Memorial E.R., an 8 hour round trip drive to Primary Children's, a mended central line and 12 exhausting hours later, we pulled back into our garage, climbed into our beds and realized once again that there truly is opposition in all things. Great news that treatment is going well and that remission was achieved, feeling that we could now relax a bit- not so great of news to have a complete accident happen, a little scare and unexpected set-back. Opposition!

In Elder Joseph B. Wirthlin's talk at conference he addressed this very issue. He said, "I know why there must be opposition in all things. Adversity, if handled correctly, can be a blessing in our lives. We can learn to love it." Essentially...come what may, and love it! Whether it's weeds in the grass, a train down the track or a broken central line, we can learn to love what we learn from it. Because really, most opposition or adversity doesn't last forever. The grass will eventually take over the weeds, the train will go down the track and central lines can be repaired. Opposition can be overcome. And... I'm learning everyday how it really can become a blessing. I've experienced so many instances that I've really come to know the truth in this. We are gaining so much, despite our loss.

What I learned to love from this last bit of opposition was to appreciate what I used to have day in and day out- "normalcy." I never used to fully appreciate it for what it was- my perspective has now been changed and I have learned contentment. I found this poem that explains it perfectly.

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return. {Mary Jean Iron}

As we were driving back from Salt Lake in the wee hours of the morning, I layed my head on Justin's shoulder and told him that some day we'll have it back. Our "normal." This too shall pass. And I wonder why I sometimes thought it was so hard before. I will cherish the day when Rylee can play without worry, when we no longer have weekly Dr. appointments or treatments to go to, when there will be no need for daily medications, when she can go out and about without fear of germs or getting dangerously sick, when a week goes by that we aren't waiting on one test result or another, when giving her a bath will no longer require saran wrap, press 'n seal or tape to protect her dressing, when she can lay her belly down and submerge in the water and kick and get water wherever she wants to without risk of getting infection in her line. Just a good 'ol normal day. Bless that day! I will be grateful for it.

But for now...we'll learn from our opposition. Because without the opposition, we wouldn't recognize what a blessing life is-just plain old simple, normal life. We could not rid Rylee of this disease without dealing with some opposition. And it's worth every bit of opposition for us to do so. Beautiful daughter, terrible disease. Opposition! Accidents happen, just grateful that it all worked out. Come what may!

(And just to be clear- there are no hard feelings over this. Her cousin is only a little older than Rylee & does not understand or know better. We were all shocked that it even happened. It really wasn't anyone's fault. This is new to all of us and with this comes some adjustments, changes and lessons learned.)

A Glimpse/Update: Rylee's First Phase

So...I've been meaning to do some updates on Rylee and then I decided to hold off until we got the results back from the bone marrow test that she got last week. Thursday, Oct. 30 was Rylee's Day 28-the last day of Induction or the first phase of treatment. She had to have a bone marrow test and also a spinal puncture, where they've been giving chemo into the spinal fluid to prevent any Leukemia cells from forming there.

It's hard to believe that a month has already past since her diagnosis. Even harder to believe all that we've experienced in just a month's time. I think most of it has sunk in and we've got a pretty good handle on things now, although there are moments when this is still difficult to fully comprehend: what we're dealing with and what's ahead. The month has been full of ups and downs, but overall, it's been better than I was initially expecting. I decided to give you all a little glimpse at what it's been like in this first phase.

This past month (October) Rylee has gone through a lot. She's been diagnosed with ALL (Acute Lymphocytic Leukemia), gone on 2 ambulance rides and one ride on life flight, spent nearly a week at Primary Children's Hospital, had a central line inserted in her chest, has had 4 red blood cell transfusions and 3 platelet transfusions, gone through 4 rounds of chemo, got a PEG (chemo) shot into a muscle in her leg, had an EKG, been put under for 4 bone marrow aspirates and 3 spinal punctures, she's had 3 chemo treatments in her spine, taken steroids twice a day everyday, has had the appetite of a teenage boy, gained over 5 pounds and got all puffed up due to the steroids, been on and then off of an antibiotic administered through her central line every 8 hours for nearly a week, has taken a medication (Septra) twice a day every Monday and Tuesday to prevent pneumonia, taken several other medications daily, visited the Dr. once a week, got her blood taken and tested every week, her hair has thinned, she got thrush in the mouth for a few days and has had a bad diaper rash, that we've been treating with yet another medication. And somehow this child has managed to keep smiling and be happy.

But...the good news is that she's achieved remission! I know it may seem soon to some, however, about 95% of leukemia patients achieve remission in the first month of treatment. She actually achieved remission on her Day 14- they achieve remission if they have 5% or less leukemia cells detected in the bone marrow and blood. Two weeks ago, Rylee's was at 1% and this week's results detected 0% in the bone marrow, blood and on the molecular level. It is what was expected and certainly what we have been hoping and praying for. Otherwise, more intense treatment would have been necessary.

We wish it was just that easy though-that it was all said and done in a month. Through studies and research, they have found that it always relapses if they don't treat leukemia for just over 2 years (about 3.5 years for boys). And it most commonly relapses in the spinal fluid, which then affects the brain and central nervous system. That's why they do chemo in the spine, to prevent any bad cells from going there. So..essentially, this is just the beginning for us. There is still a long road ahead. But...the good news is that we're going to be able to move the majority of her treatments to Rexburg now. Still weekly for now- she'll still get a spinal punctures weekly, but no more bone marrow tests will be necessary, unless relapse happens. We'll learn more about the next phase of treatment this week, but basically they have taken her off the steroids for awhile and she'll start a new type of chemo and possibly some other meds as well. This week will just be blood work because to move to the next phase, it's count dependent. Dr. Jeff Hancock is a pediatric oncologist here & he trained at Primary Children's and the Mayo Clinic. He's from Rexburg originally and just joined Dr. Dixon's practice about 2 years ago. He is highly recommended at Primary's and he was the specialist they called in at the E.R. that originally gave us Rylee's diagnosis. We feel really good about him & even better that he's close and convenient since the winter weather is on it's way & I'm getting bigger & bigger each day being pregnant.

As I've said before, there is a lot of hope for Rylee. Based on age at diagnosis, type of leukemia, sex and response to treatment, Rylee is in a low to standard risk bracket. If treated for just under 2.5 years, they have about an 85%-90% success rate. However, I've seen cancer enough now to know it's unpredictable. Last week I met another parent who's son is almost 6 years old. He was diagnosed at 17 months and they have been at this fight for 4 years. His relapsed in the maintenance phase(last phase) and he is now at his last 10 weeks of his second go-round. The second go is much more intense. I really hope that we'll only have to endure this once, but realize that anything is possible.

Thank you again for your many thoughts, prayers and concern. We continue to feel the strength and power of the many prayers being offered in our behalf. This month, aside from everything that we've been through, we have also witnessed the gospel in action. Faith works, hope is real, charity never faileth, there is power in the Priesthood, prayers are answered, sacrifices of fasting are rewarded, the Spirit guides and comforts us, God knows us and loves us and He has a plan for each of us. There is no such thing as coincidence. He has purpose for all of us and has carefully been preparing this path for us by putting us in the right places at the right times and has blessed our lives with all the right people to help us get through this. We've experienced all of this first-hand, which is really, a post in and of itself.

All About Fall

I have loved this fall! We have had some pretty decent weather and I just love all of the decorations, treats and activities that come with this time of year.

The Treats:

What would fall be without treats? One day I decided to make some sugar cookies to give Jace something to do. We've been indoors quite a bit, so I need to add something to the mix once in awhile. He had fun putting the candy on top. We also made these cupcakes for the ward Halloween carnival. And...I wish I could take credit for the darling little ghost, but my SIL Hailey found these cute cupcakes at Broulims.






The Activities:

We had a lot of Halloween activities, so the kids (well, mostly Jace) have had lots of chances to dress up. We ventured out to Music Makers (our playgroup). It's the first time Rylee's gone all month- even though we still have to be careful because of her immune levels, I decided to take my chances and let her get dressed up and get out for a change. Then Jace & I attended our ward Halloween carnival. We decided it was a too big of a crowd for Rylee, so Jus stayed behind with her. Jace also dressed up for speech and preschool this week and of course, for the Trunk or Treat on Halloween. We had a handsome 'lil cowboy, a darling lady bug and plenty of loot to last us all year.

Happy Halloween 2008