Thursday, February 26, 2009


I was talking the other day to a friend of mine about the road we're traveling during Ethan's "recovery period", and she asked me if everything was now over. It had been a while that I thought about that, until our conversation, but as I quickly thought through everything we've gone through with Ethan's whole cancer diagnosis, treatment and now recovery - I told her that there were two answers to that question.

As far as I was concerned... or as far as I believed.... it's over. But from a medical standpoint and all of the statistics involved once you've been labeled a "leukemia patient" he will be monitored by some degree for probably the rest of his life... the longer that he remains in remission, of course, the less worry the doctors will exert. But it will still trickle down into other aspects of his life... watching for long term side effects from chemo, radiation and the other treatments. I told her that during those "check ups" I'm sure I will have a knot in my stomach each year just because I can't see how in our human nature, we wouldn't have a slight dose of anxiety... but in my heart, I truly do believe this is over. The miracle is ours. I don't understand the grace and mercy behind it - in the sense that I don't know specifically "why" our son was spared... but I know that he was. And I fully know that it was only the power of God.

I do have moments when it will hit me... Ethan had leukemia.

Ethan is recovering from having cancer.


My baby boy had cancer.

Our son, 11 weeks old at the time.

Diagnosed. With. Cancer.

What in the world?!?!

And I do re-live various moments of the entire process... but just like an umbrella shields you from getting wet in the rain, there's an umbrella of peace around each of those memories. The Lord was there. And it was clearly evident every single day. It's still clearly evident. I remember praying and even writing here in an older post that I not only wanted Ethan to survive, but that I wanted him to thrive. And I assure you, there's not a better definition of the word "thrive" than in our little Ethan. You'd NEVER NEVER NEVER even guess that he's been sick a day in his life, let alone fought leukemia.

Sometimes I can't wrap my mind around God's mercy. His love. But I tell you one thing, I know it exists. I know that better than I know anything else. And most of the time, nothing else matters. Our son is here. He's alive. He's strong (and strong-willed!). A miracle in the truest sense of the word. And he's mine. There aren't even words to describe the gift. How do you say "thank you" to the Lord for such a thing. Yet, I find comfort in knowing that He knows my heart.... He knows my overwhelming thankfulness. And outside of that, I try to thank Him by giving Him every bit of glory and praise for it.

People have told me on many occasion that they'd not be able to deal with something like this if it happened to them. As if I must have some supernatural strength or faith. And I always tell them that if it weren't for the Lord, I'd have fallen a part a very long time ago. I was trying to think of a better explanation and I remembered the verse Philippians 4:13 - I can do all things through Christ who strengthens me. Now as many things as that verse gets applied to, it's the only truth that explains how our family has endured the biggest trial we've ever faced. I can do all things (yes, even a deadly disease being allowed to enter your child's body) through Christ who strengthens me. That's it. Plain and simple. It is not me. It is not my own strength. It's not that I have the secret to the "right amount" of faith. It's only - and I do mean, ONLY - that God gave me (and Adam) the right amount of everything in order to withstand the pain, confusion, hurt, disappointment, etc. His strength in me. His peace in me. His mercy on me. His grace on all of us. His purpose. His plan. All we did was try to open our hearts to Him and trust Him.

And in the tears or the smiles....

He gave us what we needed, when we needed it.

Monday, February 23, 2009

cell phone cameras sure are handy....

Reading with mommy....

Getting into the diaper basket.... and quite excited about it...

Getting into the mail that was accidentally left on the floor....

Say cheese!

Saying "ma ma" during play time....
Then a morning nap time.... for both of us! Since this was the morning he woke up at 4:30....

Looking for a new adventure....
Look at me! I crawled inside!
Someone is quite proud of himself.... What a cutie pie!

First bath since having my tubes removed! WHAT IS GOING ON?!?

Check me out! I'm having a blast splashing around....
Look at my chest! Just a tiny band-aid instead of a very long tube! I'm a free man!!

Just a glimpse into our some of our days.... Good times!!
Every good gift and every perfect gift is from above,
and comes down from the Father of lights.... James 1:17

Sunday, February 22, 2009

eventful couple of days...

Well, kind of. The morning after Ethan's little surgery to have his line removed, he had terrible vomiting. Most likely a delayed reaction from the anesthesia. And then all day he had a low-grade fever. Most likely nothing to do with the surgery/anesthesia/vomiting, but instead a tooth that was about to break through his gums. It was a mildly stressful day because his low-grade fever got up to 101, and you know the drill by now.... if his fever goes over 101.3 it's an automatic trip to the emergency room since he has a weak immune system. I was checking temps in both his ear and under his arm and thankfully, it mostly hovered around 99.5 & 100 and by 10:00 that night, it had dropped to 99.1 and was completely back to normal the next morning. I gotta admit, though, that the whole day of wondering - are we going to the hospital or are we staying home - left me once again EXTREMELY thankful for being at home. I know we don't get to get out much since Ethan can't be in public places just yet, but man oh man, home sweet home is so much better than having to stay in the hospital... trust me... I'll take this isolation period with pleasure if it means we get to have the comforts of home!!

All is much better now. Ethan's chest is healing quite nicely, and his tooth broke through this morning... so we are back to normal around here. Thank you all for praying for us. I'm still amazed at God's mercy and protection over little E. Every day I am overwhelmed that I have another opportunity to be his mom. He's thriving, truly thriving.

His life means so very much to me....

There's a song that's been in my heart lately. I remember singing it in church when I was a little girl - and to this day - the words ring sweet in my soul.

Oh, how He loves you and me,
Oh, how He loves you and me.
He gave His life, what more could He give;
Oh, how He loves you,
Oh, how He loves me,
Oh, how He loves you and me.

Jesus to Calv'ry did go,
His love for mankind to show.
What He did there brought hope from despair.
Oh, how He loves you,
Oh, how He loves me,
Oh how He loves you and me.
Oh, how He loves you and me,
Oh, how He loves you and me.
He gave His life, what more could He give;
Oh, how He loves you,
Oh, how He loves me,
Oh, how He loves you and me.

Wednesday, February 18, 2009

hip hip hooray!

Well, it was somewhat of a long day, but truly, Ethan could not have handled things better....

We weren't planning to leave for his day surgery appointment today until around 11:00 this morning. His surgery was scheduled for 1:00 pm. So, I treated our morning fairly routinely - except for not being able to feed him anything but Pedialyte before 9:00, and nothing at all afterwards. Anyhoo... I'm sitting in our recliner, eating some oatmeal, and watching a Blue's Clues video with Ethan while he's playing on the floor. It's about 8:15 in the morning. As I take my last bite of my breakfast, my cell phone rings. I recognize the hospital's number by now. The nurse on the other end of the line proceeded to tell us that there was a cancellation, so they wanted Ethan to come in right away. Did I mention that I was still in my pj's? When the nurse asked if we could leave right away, I jokingly said that I'd need to brush my teeth first, and she honest-to-goodness said "don't bother, we need you guys to come in now!".

Of course, I still brushed my teeth and tried to look somewhat presentable... but then we were out the door! By 8:45, we are checking in at the appropriate floor. And apparently, Ethan wasn't the only patient they had called in a panic to move up all the day's appointments. This is where God's sweet presence was quite obvious. Ethan and I had to wait in the pre-op area for about 4 hours. So glad we rushed, huh? No, I'm just joking. It ended up being just fine. Ethan was mesmerized by the hustle and bustle of people and kids all around him. He was soaking it all in. Never a fuss. Never a cry. Just observing. He was wonderfully well-behaved... and wow, was he patient! At 12:45 he went in for his tube removal, and fairly quickly was out in recovery. He was crying now, but only because he wasn't sure what was going on. And the rest of the night, he's been his normal, spunky self.

And.... without any tubes hanging out of his chest!!

I can barely believe it. I know it will make drawing his blood more difficult, but oh, what a sweet thing it is to see his chest free and clear. He can wear normal shirts now... take baths... and crawl around to his content. He can even go around the house shirtless if he wishes.... because there's no more fear of him tugging those lines or hurting himself with them. I'm soooo excited!! He has some bandages on him that I can remove on Friday, and hopefully all looks great when we take the bandages off. My parents and I were reminiscing about how it's been just over 10 months since these tubes were inserted into his chest and veins. He's just over 12 months old, so you can see how long it's been since he's had his central line. It has served a wonderful purpose for his treatment, but what a joy to have them gone!

Thank you so much for your prayers today. Everything went very smoothly. And Ethan did so so so well with all the hiccups in between. He was such a good boy!

Romans 8:38-39
For I am persuaded that neither death nor life,
....nor things present nor things to come,
nor height nor depth, nor any other created thing,
shall be able to separate us from the love of God
which is in Christ Jesus our Lord.

Tuesday, February 17, 2009

central line update

Ethan's doctor appointment went well yesterday - all of his counts from his blood work came back great (praise the Lord!!)! And, I was able to show the doctor the terrible issues we are having with Ethan's central line (tubing coming out of his chest) and how awful the skin around the bandage has become. The soonest appointment we could get to have the line removed is tomorrow afternoon. I'm very excited about this! However, I'm nervous too.... because his surgery is set for late tomorrow afternoon, and he cannot eat after 9:00 tomorrow morning. This is not going to be pleasant.... It's a simple surgery to remove the tubes, but anesthesia is still necessary. We'd be grateful for your prayers for his frustration while he can't eat, as well as your prayers for the actual procedure. It will be so nice to have his chest free and clear of any tubes and finally be able to dress him in normal shirts - AND - give him a full bath!! We've only been able to sponge bathe him so as to not get the bandaged area wet... but soon we can splish-splash all we want!!

Thank you for your prayers for us tomorrow (Wednesday)!

Monday, February 16, 2009

let's move on... shall we?

I wanted to say a sincere thank you to everyone who sought to encourage me yesterday and today. I was surprised by the personal attacks from the anonymous individual, but have come to understand that it's not my issue to carry. I know who I am through Christ and I know the love I have for Him, and my family. And the love that God has allowed so many of you to have for us. I thank you for such a sweet blessing. I've decided to delete all of yesterday's online "activities" because much like a red sock can ruin a laundry load of stark white towels, I don't want such a stain to be a part of Ethan's one day reflections over this time in his life. There are people who will always misunderstand us, judge us, hurt us, etc.... but a sweet friend's email reminded me that Jesus was treated no differently during His time on earth - and He always sought to forgive. And we are called to likewise forgive those who hurt us... or try to. My peace is from God, my strength is from Him and that's all that matters today. He is my defense.

I would also like to ask for your prayers for Ethan's doctor visit today. We are trying to get him scheduled to have his central line removed ASAP. He has started pulling on it and scratching at it so hard that the skin around the area is starting to bleed. Quite problematic!

Thank you for your prayers. Thank you for your encouragement. I read all of your words and smiled at the love many of you have for our family. Sweet blessings back at ya!

Saturday, February 14, 2009

happy valentine's day!

This is my 200th posting on this blog.... I can't believe that. 200.


To celebrate the milestone, I thought I'd let our little man do all the "talking".



Thank you for following Ethan's journey... you each continue to be a blessing to us.

Praise the Lord for answered prayers.... 200 blog posts, and going....

Wednesday, February 11, 2009

a crossroad

From about the age of 5, we know what the plan is. Yep, after the first few months of kindergarten, we learn that next year we will move into First Grade, followed by Second Grade, Third Grade… soon to hit Jr. High, leading us then into our High School years. So, from the time we’re 5 years old, we have an understanding of what our life will involve for the next long while. There’s no real dilemma. Well, aside from the unfortunate and inevitable adolescent struggles.

Then comes graduation day. Based on whatever plan you’ve already decided upon, or in some cases, what has been chosen for you, you move on to the next step of your life. College, the military, the family business, etc. If you were like me, college was the obvious choice and the one I never questioned. Much like I never questioned whether or not 7th grade would follow 6th grade. I just knew it to be so. Each previous step designed to propel me into the next one. My logical thought process while in college was to graduate, find a good job & get married. Though, I didn’t necessarily have a preferred order in which those events had to occur... However, they ended up falling into place rather traditionally. Graduated after 4 years, landed a very good job in a large company just months before graduating, and met my husband not long after. Nothing was too surprising for me. I went to the college I wanted to go to, got the degree I worked hard for, I got married and after a few years, I had a baby boy. To a certain point, I never really had to question the next step of my life. Of course, I didn’t know all the details - quite a bit of learning as I went along, actually. If our life is a path we walk down, then my path had it’s various forks in the road. Like most do. And on occasion, it took me a while to realize that I chose the wrong direction and had to turn around and start over. But I assume that’s quite usual for most of us. And, though I may have needed “directions” along the way, I always knew what it was I was heading towards next.
Until recently…..
So what happens when all of the things on your “early years” checklist have been checked off, and a few (major) curve balls have been added to your overall life experience that you’d never anticipated. What happens when your life is no longer mapped out in front of you like it was when you where a child/teenager? What do you do when you take a minute to stop and re-evaluate the path your on, only to realize that you can’t see anything. And instead of there being a simple fork in the road, you see a 4 way stop. What path is your life meant to take now that there is no “road map”… no laid out plan to follow? And the aforementioned curve balls have changed your perspective on just about everything in your personal life that you once understood?

Well, that is a poor attempt to summarize where I’ve been as of late. Standing in the middle of a crossroad and not at all sure what it means. Not at all sure what the next step should be. Not at all sure what the next step will be. So, being the reflective person that I am, I’ve been doing a bit of self-examination. Wondering why I haven’t been able to see “life” beyond what I know it to be right now. Looking for the Hope that got lost somewhere in the process of finding my footing in my own life, once again. And I’ll be honest, my “research” hadn’t produced much of an answer to the apathy that had set in. In fact, my being oddly content in that apathy, became quite problematic in my day to day living. I knew how to be Adam’s wife and I knew how to be Ethan’s mom, but I forgot how to glean joy from either of those roles because I became so afraid of what joy would be robbed of me again, should I let myself get my hopes up about something involving them or me.
It actually became quite a depressing way to live.

But then I realized something, well… am realizing something.

My life hasn't stopped. I did. I stopped living it. Content to let each day pass me by, assuring myself that no effort of Hope spent, meant no Hope wasted - no Hope that could be taken away. Low expectations = low disappointment. But really, all it meant was that I had given my future over to fear. Simply resigning to allow myself to look forward to nothing, believing that if I did that, I couldn't be hurt.

See, the plan didn't stop. The purpose is still there.... my purpose. The path didn't end. I simply stopped walking.

So what does one do when they are in need of direction?

Pray. Become quiet before the Lord... for however long it takes. And allow Him to lift the veil of fear that had been covering your eyes. My eyes.

When I look through His eyes of love and grace, I see I'm not standing at a 4-way stop after all. It's still the path of my life. There's not even a fork in the road this time. Simply a straight path in front of me, and it's path lingering behind me. One choice to be made. Turn around and linger in the past. Sit down in fear, never to further open the gift of the days ahead. Or... take a step forward in Faith.

I took a step today.... a step forward. Reclaiming my life from the grip of fear's stronghold. I can't control the future. I understand that. But what I failed to remember, is that my future is in the palm of God's hand.

And He has never left me without the desires of my heart.

For I know the thoughts that
I think toward you [Kasey], says the LORD,
thoughts of peace and not of evil,
to give you a future and a hope.
Jeremiah 29:11

Sunday, February 8, 2009

make a way

I thought I'd share a few things while I was online today....

First, just some recent random pics of Ethan. The first one is of me and him last week at his doctor's appointment in Boston. Pay no mind to my cheesy expression... I was trying to distract him from the long wait we had before the doctor came in, by taking funny pictures of us with the camera in my cell phone. The next is just him chowing down on some goodies at the high chair... he's getting much better at it! And finally, our little cutie, in motion!

The second thing I thought I'd share is just a prayer request regarding Ethan's central line in his chest. With his new ability to crawl around, it's getting much harder for the adhesive on the bandage to stay put. So as he moves and wiggles, the bandage becomes loose and starts to come off. This isn't a good thing, because it puts him at risk for bacteria and infection in the insertion point of the tube going into his skin. We are only supposed to change the bandage and clean the area once a week to minimize exposure, however, lately we've had to change it more frequently. The skin around the bandage has become very irritated and Ethan scratches it, thus tugging at the bandage area, and even pulls it off this way as well. It's become a bit problematic and we're praying that no serious problems arise as a result of these situations we're dealing with in trying to keep the central line "safe". He needs this for a few more months, so please pray no bacteria/infections creep in and that he will stop "playing" with it. The tubing itself is also showing some wear since he's had it in him for so long. Pray everything remains good with his lines until it is time for them to come out. You can see the central line I'm refering to in the picture over on the top right hand side of this website. See the two white tubes that come out of his chest, and the bandage at the top? That whole package is his "central line". Imagine trying to keep all of that out of his reach (we pin the tubes to his clothes so we or he can't inadvertenly pull them), keeping the bandage in place (the bandage is protecting the area at which those tubes go into a chest and into a vein), and not damaging any of it in the process :-)

And finally, I thought I'd post the devotional I read the other day from "Streams in the Desert".... titled, Make a Way.

"I will make all my mountains a way" Isaiah 49:11

God will make obstacles serve His purpose. We all have mountains in our lives. There are people and things that threaten to bar our progress in the Divine life. Those heavy claims, that uncongenial occupation, that thorn in the flesh, that daily cross -- we think that if only these were removed we might live purer, tenderer, holier lives; and often we pray for their removal.
"Oh, fools, and slow of heart!" These are the very conditions of achievement; they have been put into our lives as the means to the very graces and virtues for which we have been praying so long. Thou hast prayed for patience through long years, but there is something that tries thee beyond endurance; thou hast fled from it, evaded it, accounted it an unsurmountable obstacle to the desired attainment, and supposed that its removal would secure thy immediate deliverance and victory.

Not so! Thou wouldest gain only the cessation of temptations to impatience. But this would not be patience. Patience can be acquired only through just such trials as now seem unbearable. Go back; submit thyself. Claim to be a partaker in the patience of Jesus. Meet thy trials in Him. There is nothing in life which harasses and annoys that may not become subservient to the highest ends. They are His mountains. He puts them there. We know that God will not fail to keep His promise. "God understandeth the way thereof and knoweth the place thereof. For he looketh to the ends of the earth, and seeth under the whole heaven"; and when we come to the foot of the mountains, we shall find the way.

"The meaning of trial is not only to test worthiness, but to increase it; as the oak is not only tested by the storm, but toughened by them."

Friday, February 6, 2009

2 corinthians 12:9

"My grace is sufficient for you...."

Monday, February 2, 2009

ethan update

Ethan and I went to Boston today for his check up and he got another clean bill of health today! All of his blood counts & levels look good, except for a new elevation in his phosphorus levels. This is expected to be a result from the medication he's on which can have an adverse effect on kidney function - which is also assumed to have been the culprit behind his high potassium levels in the past. So the high phosphorus is a slight concern and prayer is needed that it doesn't get any higher. However, the bigger, or more overall prayer request is that starting today, Ethan will officially start weening off of his Neoral medication (aka: cyclosporine medicine, for those of you in the chemotherapy/cancer/marrow transplant world). This is a huge blessing, because Neoral is an immuno-suppressive agent which weakens/suppresses the response factor of your immune system in order to prevent your body from rejecting the necessary engraftment of the new marrow cells. If you've followed my blog for a while, you'll remember me asking for prayer that Ethan would not get Graft-Versus-Host-Disease (GVHD). Well, this medicine has been working to keep that from happening. Yet, it also keeps his immune system weak, puts pressure on his kidneys, and messes with other aspects of his body. All in all, Ethan has handled the heavy medication quite well, and the only signs of GVHD he's ever shown was a mild rash. THIS ALONE IS A HUGE ANSWER TO PRAYER!

The new prayer request would be that the GVHD doesn't decide to suddenly spring up as a result of Ethan starting to be weened from the medication. It will be a 10 week weening process, and if all goes well (meaning he responds well to being off the medication) then we can start re-introducing him to public places by mid-April! The way it's set right now is that he will be fully off the Neoral medication on April 13th... just five days after his one year mark from being initially diagnosed with leukemia last year on April 8.

Please pray over this specific situation. Pray the weening process isn't interrupted by any negative side effects, continue to pray against GVHD, and continue to pray for Ethan immune system to develop strong and infection-free.

We're getting close to being able to be "normal" again, and I'm looking forward to that so much. I'll admit, though, that I felt an odd surge of panic go through me today when the doctor was casually explaining the long-term plans for Ethan's follow up visits in the years to come. His one year mark from the date of his transplant will be in August of this year. And each year after that, he will be seen by the doctors in Boston to monitor for any long-term side effects from the radiation, heavy doses of chemo and the actual transplant. His eyes will be checked each year for cataracts, his ears will be checked to show no strain in his hearing, his heart will be check for any changes in the 4 chambers, his lungs will be checked for any complications, etc. Of course, I knew a long time ago what the long-term side effects could be (I refuse to say what the side effects "would be", because I'm believing in the 'whole package miracle'...) however, I did feel an initial lump in my throat, realizing again that we'd be under this umbrella for about another 10 years or more. But as the day has worn on, I've mentally crawled back to that place of hope and faith I stood on before Ethan underwent any of these "dangerous" procedures.... and I've decided that each year that we have to go back for a long-term side effect and remission "check up" will be another year that we're reminded of the miracle of Ethan's life. And every year, when they don't find a single thing wrong with any part of his body, we will get another opportunity to tell the wonders of God's hand.

And you're a part of that, ya know. A huge part. Your prayers.... I simply can't thank you enough. This month makes 6 months since Ethan's transplant, and if you looked at him today, you'd NEVER know anything had been wrong with him. You'd never guess in a million years that this little boy ever had cancer in his body. He's as perfect as a little 12 month baby boy could be. And it makes me sad that I will never be able to fully express to you the impact you've made on our family. On Ethan's life. I don't know what God's plan was with Ethan's disease... but I know He's heard you... He's heard us.... and our son is living proof. much I am thankful for...