*update* urgent prayer & praise!

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----------------- UPDATE -------------------

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Within minutes of me shutting down the computer after leaving the below post, Hope called me to let me know that the NYC hospital had called her (she and her husband were half way there) that the organ they were going to use for their daughter's transplant tonight had started to die. With that, it was determined that the organ would not be able to survive a transplant. So, they are now turning around and heading back to Connecticut. No donor match. No surgery. I can only imagine the disappointment they're struggling with at this moment. Pray God's mercy on them. Pray for a donor for Alana. Pray her health stay strong until one is found.

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------------------- ORIGINAL POST -----------------------

A few times I've mentioned to you that the Feliciano family was in need of our prayers. They were in the process of adopting a very sick little girl (named Kevy, but her name was recently legally changed to Alana once the adoption process was finalized) who was in need of a bowel transplant. They've been waiting for a donor for quite a while and this afternoon Hope (the mother) got the call from the New York hospital that a small bowel/intestine was in their possession and that she and her daughter needed to head to NYC as soon as possible. This has been a long answer to prayer, however, prayer is still very much needed for this family.

Alana (not quite 2 years old) will be going through a major surgery tonight. A successful surgery is her only chance of survival and it's quite an invasive one. Hope will be staying in NYC (away from her husband and 3 kids at home here in Connecticut) for about 6 to 8 weeks. Having been through that same situation during Ethan's cord blood transplant in Boston, I know that she will need your prayers and encouragement, as it is difficult to live in a small hospital room with your sick child while also being away from your loved ones for such a long time. I will find out her address at the hospital and will post it here as soon as I know. So many of you reached out to us during such a difficult time and I know Hope would likewise benefit from your thoughtfulness. I'll keep you posted....

But mostly, please simply pray for this family. Pray for the 3 kids at home (2 under the age of 6 and one in highschool) who will miss their mother terribly. Pray for Cesar (the husband) who will have to take care of the home and the kids, while missing his wife and being a part of Alana's recovery. Pray for Hope as she endures a scary and lonely roller coaster ride over the next 2 months. And, pray for Alana.... pray her body accepts the new organ, that her recovery is without complication, pray her body remains free of infection, and pray that this procedure cures whatever it is that is attacking her little body. Pray God's hand be in every single decision that the doctors make, and that Hope feels His comfort and peace each step of the way.

Thank you in advance friends. I spoke to Hope this evening as she was on her way to NYC. I understood the fear in her voice... the apprehension. But I assured her that we would pray.

Strangers we might be, but at the throne of God, we are united brothers and sisters... lifting one another up.

too much

Ethan just went down for his morning nap and I decided to catch up on some computer time. Little did I know I was only minutes away from rapid tears streaming down my face in such a way that I had to get up and walk around the bedroom several times before sitting back down at the computer desk.

I started reading some blogs I follow - catching up on some of my favorites - and stumbled upon another blog (my heart breaks because there are soooo many websites of parents asking for prayer for their deathly sick children) of a mom, broken and weary as her 5 month old son fights for his life in the hospital. And though her son is fighting a completely different disease than our Ethan had been fighting, I was immediately taken back into those days of being in the hospital with him. The beeping machines, the various IV and tubes, the nurses & doctors giving hourly updates, the medications.... the fear.... the tears.... the prayers.... the ups and downs. All of it.

And I couldn't have stopped my crying this morning if I tried. But they weren't only tears of understanding the burden this mother is carrying, but my tears were also those of not understanding. Not understanding why Ethan has had his life restored. His life saved. When others do not. Crying in humility that my son is with me here at home, thriving, and this other child is literally a breath away from death. I can't stop the tears even now. I feel so unworthy of such a miracle, and even though I fully know our miracle didn't happen because we "deserved it", I still can't help but feel so small that God would give such mercy to us. I want my child saved. I believe he has been. But I also want these other children... these other families.... to have that as well. And it's so difficult to reconcile it all. But I know, as I've said many times, that God ways and dealings in our lives serve a significant purpose. All for His glory, in whatever shape or form that may be. If Ethan being alive after everything he went through, touches the life of someone else and leads them to the Lord, then that's reason enough for the miracle. And as hard as it is to even type these next words, if the testimony of the family who suffers the loss of a child touches someone (or many someones) who might not otherwise have been reached, and brings them closer to the Lord, then that is likewise a miracle. Father, whichever miracle this weary family receives, give them peace and comfort at this moment.

It's not easy to wrap our minds around it all. Because even now I feel uneasy. But through the weeping I know God has a purpose in all He does and allows. I know it and believe it. Sometimes He asks for what appears to be too much for us to sacrifice.... but He restores the broken pieces. He's faithful and He restores.

Lord, I don't always understand.... but I'm so thankful.... Ethan's life.... his healing..... allow this sobbing state I'm in somehow express to You my thanksgiving. Words fail me.

simple, but sweet

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A dear friend emailed me this bit of encouragement and I thought I'd pass it along to you...

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Sometimes we wonder, "What did I do to deserve this?"

or "Why did God have to do this to me?"

Here is an explanation that breaks it down in a wonderful way.

A daughter is telling her Mother how everything is going wrong,

she's failing algebra, her boyfriend broke up with her

and her best friend is moving away.

Meanwhile, her Mother is baking a cake and asks her daughter

if she would like a snack, and the daughter says,

"Absolutely Mom, I love your cake."

"Here, have some cooking oil," her Mother offers.

"Yuck" says her daughter.

" Ok, well how about a couple raw eggs?"

"Gross, Mom!"

"Would you like some flour then? Or maybe baking soda?"

"Mom, those are all disgusting!"

To which the mother replies:

"Yes, all those things seem bad all by themselves.

But when they are put together in the right way,

they make a wonderfully delicious cake! "

God works the same way.

Many times we wonder why He would let us go through such bad

and difficult times. But God knows that when

He puts these things all in His order,

they always work for good!

We just have to trust Him and, eventually,

they will all make something wonderful!

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Such a simple illustration, but it makes so much sense. Thank God there's a purpose for the trials He allows. The end result. The big picture. The sometimes uncomfortable, but necessary, parts of the journey leading us ever closer to the purpose and calling in our lives. The cake.

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By the way, Ethan's doing very well this week. The rash continues to flair up over his body, but it responds well to the medication. We're still working on getting him to eat more than just formula, but we're being patient and enjoying the small strides he makes on occasion. He sits up perfectly well on his own now, and can get to that position even when he's been crawling around on the floor. He's starting to show an interest in "pulling up", as well, which has been such an exciting experience in his overall development. He's such the star of our family! And an absolute blast to be around. He's so expressive and feisty! (wonder who he gets that from - *no comment* - however, if you ask Adam he'll gladly tell you it's me) Anyhoo, your prayers for us continue to prove God's faithfulness. As always, thank you so much for walking through each step with us.

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I pray we all get to see and enjoy the "cake" in our lives.

love your life

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Love your life.

This post has been swimming around in my head for a few weeks now. I read that phrase, "love your life" one day in passing, when I skimmed the cover of a magazine. They purposefully had the word "your" in bold print. Obviously wanting that piece to stand out - and make a point. Since then, I've thought about those 3 words over and over. And I got to a point shortly after, in which I felt comfortable stating that I do love my life. I wasn't too interested in trading my life with someone else's and I felt pretty good about the direction things seemed to be going for us. It was around that time, that posting about "love your life" here started making sense to me. Like I had some handle on things that I might ought to share with someone else. Well, suffice it to say, the Lord felt it necessary to test my resolve. In essence, He was asking me the question, "Kasey, do you love your life? Really?" And as if it were a live conversation my thoughts said, "of course... things are looking pretty good... why not love my life".

Then a set of events took place in our personal lives that forced me to look deeper into the meaning (and importance) of loving your life.

Let me back up a minute and say that nothing earth-shattering happened in our lives during the past few weeks (I'm secretly hoping we've reached our limit of earth-shattering events for a while), but it was a series of disappointments that though individually were relatively small, seemed to pile up into an overwhelming sense of despair. We'd get our hopes up about something and then have to accept that it wouldn't come to fruition. And then Ethan's horrible rash on his face & diaper area factored into the mix (side note: praise report, his face is sooooo much better!) and many other factors that just squelched my spirit. I felt a sort of envy start to rise up in me that made me feel like giving up on having any enthusiasm for... well, anything. And I started the downhill spiral of comparing our situation with someone else's, or being irritated that we weren't able to move forward towards a desire that we had, and completely moving away from gratitude over the things we did have in our lives. After about 2 weeks of battling with these various disappointments, God brought back to my mind the phrase "love your life". And I (shamefully) remembered how it wasn't but a month ago that I felt "qualified" to write about such a phrase and felt confident that I did love my life (and was thankful for it).

Then it all clicked.

A test.

"Kasey, do you love your life? Even if it's not picture perfect? Even if you have to wait a little longer for the desires of your heart? Even if you don't always get the desires of your heart... can you still love your life? Can you still be thankful for what you do have?"

A ton of bricks... let me tell you.... it hit me like a ton of bricks!

Of course! All of these situations were to force me to take a deeper look inside myself. The Lord couldn't let me blindly assume an area of my life was fully in check, if it really wasn't. It's like thinking you're sincere, only to find out that when pressed a little harder, you realize that maybe really aren't. So when I told myself "life is good!" I honestly wasn't believing that current situations were good, I was telling myself that once "xyz" happens... then life will be good! In a sense, living for the expectation of something happening - and basing my "contentment" on the fulfillment of that expectation - instead of truly being content within the current situation, as is. So when the expectation isn't met, disappointment and resentment show their true color, and you realize (as I did) that your "contentment" wasn't real. See, God knew that about my heart... but I didn't. And in His own way, He allowed me to figure that out. To take an inventory of the goodness in my life and truly be thankful for it. All of it. Even if nothing changed from what it is today - not just with Ethan, but in every detail of our lives - that life would still be good.

My life.

It's very good.

And I'm very thankful to be living it.

Whether it's the roof over our head, the toys for our little tyke, or a husband that knows to keep the refrigerator full of diet dr. pepper and the freezer full of whole wheat blue berry waffles. It's all good. And, I can honestly say - without any thought for tomorrow or what may or may not be in store for us - I love my life.

visit details

The fantastic news is that Ethan's blood work once again shows all things positive! That is a continued blessing!! It shows that Ethan's body continues to accept the new donor cells and that his body is learning to adjust & function properly.... Thank you, Lord, so very much....

We got to see Ethan's primary oncologist who set up Ethan's treatment protocol back at Ethan's initial diagnosis. He built the "plan" and others helped execute it, but it was good to see him. He walked by our room and stopped in to see how things were going with Ethan. I was able to have a good conversation with him about Ethan's skin issues. The good news is (and I've known this was true) that Ethan's rashes are all a result of his cord blood transplant and his body still accepting the newly growing cells. The bad news is, these types of rashes are never easy to treat and have many root causes (fungal infections, etc). We discussed a plan we're going to be using this week to see if there's any improvement. It requires one ointment on the upper part of his face, and a different ointment on the lower part of his face. For you leukemia mom's out there - and anyone else who's curious - we're treating the upper with Protopic and the lower with Nystatin. And treating the diaper area with an anti-fungal cream (Vusion). Pray these do the trick!

Ethan brought tears to all the nurses when it was time to draw his blood. It was so sad.... he screamed and cried as soon as they walked in.... he just knew. But thankfully again, they found the vein the first time, and got all the blood they needed quickly. And he even got a toy afterwards.

All in all, a very good visit. I'm hoping we start seeing changes in his face and eyes soon. And I'm trusting the details to the Lord. I make myself crazy when I try to figure out all of this on my own and get too caught up in the in's and out's of it all. I was reminded today, to leave it all in God's capable hands. Maybe that was the reason for all of this anyway.... a lesson for this momma of "letting go" and trusting Him.

Thank you so much for your prayers! I read this verse and thought of you, my blog family... our prayer warriors. I pray God blesses you for every kind action done and prayer you've ever spoken on our behalf!

The generous soul will be made rich,

and he who waters will also be watered himself.

Proverbs 11:25

pre-rash pics & some misc thoughts

First and foremost, I want to thank you for praying for Ethan's rash on his face and eyes. It's still problematic, but we go to the doctor tomorrow and I'm hopeful she'll have some insight on what we can do differently to treat it. Which also means we are "going to the doctor" aka "it's that time again".... blood draw in the arm. I already know Ethan will hate it and will be miserable throughout the experience. However, I do ask for prayer once again that they will get all the blood they need the FIRST time, that they only have to prick him once, and that the results do not show any odd numbers that would require him to be re-tested the following day. One day of this type of drama is quite enough.... I don't want to him to have to endure it twice because the lab made a mistake or something! Pray also that the doctor has complete wisdom and insight from the Lord on what we can do to 1) make Ethan's eyes better, the skin around his eyes is starting to become raw and cracked and 2) make Ethan's face less dry and irritated. Everything we've tried over the past week and a half hasn't helped.

Thank you for your prayers for us tomorrow (Tuesday). I mean that sincerely. Your prayers continue to be a very big part of our lives. Maybe even more than you know.... and I never, never take the fact that you do pray for us, lightly. In fact, I'm still moved to tears when I think about it.

I thought I'd let you know that Ethan's doing a little better about the eating aversion he's had for sooooo long. He's still a very fussy eater, and still primarily on formula.... but he's getting more and more used to solid foods... and though he only takes "baby steps" (no pun intended) from day to day, I'm encouraged that he's slowly broadening his horizon with different foods.

I also thought I'd share with you that I've been a little "off" lately. Kind of lost in thought. There are many explanations for it, but I don't have exactly the handle on things in order to fully express what I mean right now.... but for a long time I've been at a standstill... with most every aspect of my life... taking care of all the details of Ethan's recovery... and I'm craving the opportunity to move forward. For me, Adam and Ethan to move forward. Into what, I'm not sure. But I need to know... to really see... that there's more to this journey we've been on.... to see beauty for the ashes. It's true that Ethan has been doing so very well, and my heart is over-joyed constantly by that alone. But truth be told, we're only weeks away from the one year anniversary of when he was diagnosed, and, it's been a very long road - full of details that no parent should ever have to do or endure. And there's been much that we as a family have had to sacrifice. And though I do believe it all necessary for God's will, I'm truly ready (in desperate need) for a change in this season of our lives.

Choppy waters calmed.

Doors opened.

To gain back what's been given up.

Many times I don't have words to describe what I'm asking the Lord for... in part because I feel as though he's given me Ethan's life and I should be grateful for that alone and not bother to ask for anything else. But deep down, I know better than that. God is more than the box we put Him in in our minds. Mercy un-ending. Yes, Ethan is alive today. And what a precious gift that is to have every single day. But, it's still been a hard road to travel down.... your baby having cancer.... even with a full recovery (which we are still believing in), there's so much that's lost. Especially being a first time parent and the hopes/dreams that go with it all. I'm just hoping for a little bit of all that back. I've been content (sometimes more than others) to walk this road hopefully not too many ever have to travel - but unfortunately I know that too many do - and in all honestly, sometimes I just want to sit down. To stop walking. And enjoy life again.

Well, I think my keyboard is sufficiently wet at this point, so I'll stop here. Thank you for listening.... it really helps me to have you here.

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Oh... before I go.... here's our little hero a couple of weeks ago. Just chillin' around the house.

i couldn't resist taking this one...

he was getting in trouble & this was his reaction

adam bought ethan his first UCONN hat... like father, like son

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I waited patiently for the LORD;
and He inclined to me, and heard my cry.
He also brought me up out of a horrible pit,
Out of the miry clay,
and set my feet upon a rock,
and established my steps.
Psalm 40:1-2

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update

Thank you for your prayers for Ethan's rash. I wanted to post a quick update that the rash has not gotten any better. His eyes in fact have gotten worse. I've spoken with Ethan's doctor in Boston and we are trying a new strategy (new medicine) to see if we can figure out the root problem. She told me to give it three days to see if it works.... so far, there hasn't been a change. Ethan's in good spirits, though. I, on the other hand, just grow more concerned. His eyes especially, I just wish his upper/lower eyelids didn't look sooo red and irritated - well for that matter, I wish his whole face didn't look that way.... thank you again for your comments, helpful hints and mostly your prayers!

prayer request

Can you pray with me about Ethan's rash on his face? I know so many of you have been covering this issue in your prayers anyway, but I just wanted to ask (again) for some specific prayer requests....

We're doing a "trial and error" treatment on his face, and of course, the treatment I used last night made his sweet face horrible this morning. Hundreds of red bumps, very red eyes (lower/upper eye lids) and red inflamed skin all along his forehead, cheeks and neck.

It's a VERY long story, but he's had some worse issues come up in his diaper area, leading me to believe that part of his rash issues might be contributed by yeast.... since he's on a daily antibiotic. SOOOO, if my theory is correct, which it seems it might be since the anti-fungal cream (nystatin) that I've been using in his diaper seems to be working, then there could be other areas of such a yeast rash on other parts of his body. The tricky (and frustrating!) part is that he has a potential of 4 different rashes on different parts of his body that all need specific treatment, BUT are also on top of each other in same areas of his skin, so one necessary treatment irritates another aspect of a DIFFERENT rash!

Excuse me while I let out a muffled scream.

Ok, thank you... I'm back.

Anyway, bottom line, it hurts me to see Ethan's skin suffer. Especially his face, eyes, arms and sensitive areas. One treatment seems to work on part of the problem, and then makes the other "rash" even worse. He sees his Connecticut doc again on Monday.... I'm praying she has some different insight than Ethan's Boston doc may have had.

His eyes.... and his face...... makes me so sad. And oh my his diaper area! You should have seen that 2 days ago. He was in physical pain anytime I had to change his diaper. I'm so thankful the Lord gave me the idea that it could have been a yeast rash that had been developing. He used to get them frequently before his transplant (though not this bad!). It's still not great, but it seems to slowly be getting better.

Anyway, I'm rambling now... at least I am in my head.... so I'll just simply ask that you pray for his skin - ALL of the types of rashes attacking him - and that I (and/or the doctor) will better understand how to treat them all.

Thank you, sweet friend.

*sigh*

Things could always be worse. I do know that. And I'm thankful they aren't. I also know that I need chocolate & a diet dr. pepper... Thank you, Lord they are both only a few steps away!

p.s. - Oh yeah, and I wanted to say thank you to the advice some of you left me before. The aquaphor has been great on the cracks in/behind his ears and in his toes, and sometimes works on his forehead. But when I put it on his face, it seems to have a "pore-clogging" effect. I'm not sure what that's about... but probably means he's got eczema on some of his face, but not all of it. Who knows, but keep any advice coming. I know Ethan's skin is a little different than most because of his transplant issues, but I'm willing to try anything to make that sweet skin happy again!

scripture

I can remember a few times in my life in which a particular Bible verse became a "favorite" of mine, but I can't remember ever clinging to scripture like I did since finding out about Ethan's illness last year. I've always known the Bible was the Word of God. His direction, His voice to us. But I've only recently truly understood what that meant. Or better stated, what that means.

Searching God's Word became an aggressive part of my first of many days in the hospital with Ethan - mainly the times I was alone at night. That was my time to be quiet & think. And verses seemed to pop out to me left and right. I started marking up my Bible and staking a claim in the hope the Words gave my heart. If you look through my Bible, you will find many verses that have a date written next to it, Ethan's name, and whatever particular prayer request had been on my heart regarding his treatment and healing. Anytime a new "negative" statistic came our way, I would repeat the words "your faith should not stand in the wisdom of men, but in the power of God". Or anytime, I started to lose hope that Ethan would make it through, I would say over and over in my mind, "this sickness is not unto death, but unto the glory of God". Each of these verses became so very prominent to me and the peace they gave me, unmistakable. I knew (and still believe), that God used various scripture from His Word to speak plainly and clearly to my heart. Even to this day, they are a comfort and a reminder... You can see these two verses written on the top of this blog and on the top right corner. And my Bible carries even more of the promises I cling to and claim over Ethan's life.

I don't mean to imply that claiming a verse gives you a sort of "magic potion". God's Word isn't so easily manipulated. But what I am implying, and what I know to be true, is that The Bible is God's Word. And He guides us towards truth, towards peace and towards His promises within those written Words. And like I said, I've never understood that like I understand that now. And I understand the power of His Word. His power. His Word. They are hand in hand.

When I'm uneasy about something in my life... unable to gain victory over the fear, the confusion, etc... I do what I did when I felt those things about Ethan's cancer diagnosis. I search the Bible. I don't always find a relief immediately... and sometimes it has taken weeks or longer to find a verse that satisfied my search for peace over something I was struggling with. But God never forgets. He never forgets my struggle. He never forgets to give me what I'm looking for, even if I forget to keep looking. I think sometimes He makes me wait, simply to remind me that it ISN'T a magic potion. A quick fix. But instead making me understand that seeking Him should be a full time job. A delightful one. Taking the time to listen. Not a panicked, hurried "I need a verse to make this _____ go away". It's not like that. And in the "searching" I'm often shown other verses that I'll need to recall at other times down the road. And the point of it all, is the peace, the true calming that goes beyond logic or reason, that follows once His Word has been revealed. I assure you, it was all I had & have during Ethan's diagnosis/treatment/recovery.

Prayers and Scripture. God. That's all.

Aside from what may be the obvious, there was a point I mentioned this to you. If you've followed my blog for any length of time, you'll know that I've struggled off and on with worry and fear. And for several months now I've been asking the Lord to give me a verse from His Word that I can claim over my life. Some peace for the areas I've been worried about, fearing, or just thoughts I've been struggling with over "the future". I've been asking... but up until last night, I didn't have the peace I've been looking for. And then, actually by accident, I found these verses. And I just knew. I knew they were an answer to my long time worrisome prayers. Not necessarily about Ethan, but about other aspects of my life since Ethan's diagnosis.

Psalm 16: 1, 8, 9, and 11 - 1. Preserve me, O God, for in You I put my trust. 8. I have set the LORD always before me; because He is at my right hand I shall not be moved. 9. Therefore my heart is glad, and my glory rejoices; My flesh also will rest in hope. 11. You will show me the path of life; in Your presence is fullness of joy; at Your right hand are pleasures forevermore.

It's what I needed to be reminded of. It's becoming my prayer....

Preserve me, O God, for in You I put my trust.... You are always before me, therefore my heart is glad and I will rest in Hope.

well... it's never simple...

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But it's always manageable, right?

Let's start with the rash....

Apparently Ethan has a few different rash scenarios goin' on. Okay, so the rash on his back, abdomen & arms are still the GVHD rash that we've known about for a while, that seems to always respond well to the medication ointment. The rash on his face, is a combination of clogged pores, and eczema. And the sores behind his ears, on his wee-wee and between his toes are in the eczema family as well. His dry and irritated scalp is a form of psoriasis. All three types of rash, of course, have to be treated differently. The face gets no treatment right now since the pores are clogged. The GVHD rash continues to get the medicated ointment. The eczema gets neosporin since they are "open" rashes and the scalp gets baby oil. And any area of the body not attacked by a rash gets Cetaphil cream.

Whew! Very sensitive skin to say the least.... but the doc said even still, Ethan's skin looks great, all things considered. Apparently GVHD can get pretty bad, and Ethan's case is still considered mild. Hard for me as his mom to believe, but I trust his doctor's experience. We can't treat his face so keep praying for the bumps to start going away. And we still aren't sure what's causing the eye irritation. Could be allergies, could be eczema... so pray they get better, too.

Now on to drawing the blood....

If Ethan could describe the situation (which he basically did, with his non-stop screams and giant tears to match!) he would say the whole experience was a nightmare. It took 3 of us to keep his arm still while they drew the 3 viles of blood that they needed. He sat in my lap, and I was basically giving him a hard bear hug. And the nurses were keeping his arm held out tight and straight. He is a very strong child. No, seriously... VERY STRONG CHILD. I tried to warn the nurses. But it didn't take long for them to understand - and hold his arm tighter. He tried to yank his arm away - while the needle was in it?!?! - several times. Not at all pleasant. Horrible is more like it. But it only lasted about 2 or 3 minutes and they only had to prick him ONCE and they got all the blood they needed the first time. I am THRILLED about that!!

However.... Ethan's experience only got worse. Today was also shot day. So about 15 minutes after they drew his blood, and after I'd finally gotten him to calm down... they came in and gave him two shots. One in each leg. Yep, not kidding. And whatever you are currently imagining in your mind about Ethan's reaction to this, I guarantee it was worse. After that point, he immediately started crying and clinging to me anytime someone walked into our room. The poor girl trying to take Ethan's temperature, about an hour later, didn't stand a chance. So here we have it. He's now going to be petrified to go to the doctor. It was only a matter of time, really. But with the central line, he never experienced pain during the visits. He simply enjoyed getting out and flirting with the nurses.

This will no longer be the case.

Oh well.... it could have been worse, right? They found a vein the first time. That was a major blessing. And we have two weeks before he has to endure that again.

Two weeks.... then we repeat.... *sigh*

Anyway, overall his counts look great. And I really felt the Lord guiding the conversation with Ethan's doctor. We talked about many things, and it'd take too long to explain all the details we talked about, but it was clear that God was in the details. I appreciated that so very much. Oh and the doctor didn't feel like the issues with the rash should change Ethan's weaning schedule! She said that his skin will be a factor as his body continues to accept the new growing cells and that all of this completely normal for even up to a year after transplant. She said that his immune system is getting stronger and the sooner he's off the immunosuppressant medication, the better it will become. So she's in no hurry to keep him on it any longer than we'd already discussed. What a wonderful answer to prayer it was to hear that!

Still pray for his sweet skin. We certainly don't want anything to get worse. I sure hope these different tactics show signs of improvement soon.


I've been thinking about something lately, and I'll share it soon.... but the tummy's growling and I gotta go eat!

boston, rescheduled

Well, yes, our Boston doctor's appointment that was scheduled for Monday was rescheduled for tomorrow (Wednesday) due to our snow storm. But it sure was a nice day at home! Adam had taken the day off to go with us to Boston, and since we didn't go, the three of us had a fun/relaxing day at home. Speaking of Adam, many of you have asked about his hand. Thank you for asking and shame on me for not updating sooner! His hand is doing remarkably better. He no longer needs to go to physical therapy - as long as he maintains the exercises on his own - which he is! He's gaining more ability and control of his index finger, and though it's not perfect and he still has certain limitations, we know that over time, it will be as good as new.

Anyhoo, back to our rescheduled appointment. Ethan and I will leave bright and early in the morning for his check up. His rash is still quite noticeable and not as "gone" as I would have liked it to be.... but I trust the Lord knows and is in the process. You may remember that this will be Ethan's first doctor's visit since having his central line removed. Which means, this will be his first visit in which they will have to find a vein in his arm or hand to draw blood for his blood work. In all honesty, I'm not looking forward to this for several reasons, but my biggest concern (and prayer request) is that they will have no problems drawing the blood the FIRST time and that they will get all that they need without having to re-stick him. I know Ethan will HATE this process (he throws a fit when he's restrained, and myself and a nurse will have to restrain him to keep him still).... so, if you could also pray that this would be as comfortable & painless as possible for him, it would be a big help to my sanity today!

And of course, we want all of his blood counts and labs to come back perfect!! Oh yeah, and pray that the doctor has wisdom in assessing Ethan's rash and what needs to be done about his medication weaning schedule.

Have I mentioned that I couldn't get through all of this process without you and your sweet prayers for us???? Well, I couldn't! And the Lord knows it.... that's why He lead you here.... that's a sweet thought, huh?

And it's true.

prayer request

And He [Jesus] said to them, “Which of you shall have a friend, and go to him at midnight and say to him, ‘Friend, lend me three loaves; for a friend of mine has come to me on his journey, and I have nothing to set before him’; and he will answer from within and say, ‘Do not trouble me; the door is now shut, and my children are with me in bed; I cannot rise and give to you’? I say to you, though he will not rise and give to him because he is his friend, yet because of his persistence he will rise and give him as many as he needs. “So I [Jesus is still speaking] say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened. If a son asks for bread from any father among you, will he give him a stone? Or if he asks for a fish, will he give him a serpent instead of a fish? Or if he asks for an egg, will he offer him a scorpion? If you then, being evil [unholy/unrighteous/sinful beings], know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him!”

Luke 11:5-13

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I was reminded of this passage of the Bible this morning in church. My eyes skimmed over the page we were reading during the service, and I saw these particular verses and it made me think a little more clearly about an on-going prayer request we've had regarding this pesky rash that continues to spread over various areas of Ethan's body. Over the past week, Ethan's rash (a result of his minor case of graft-versus-host-disease) had spread once again onto his hands, chest, stomach, neck, chin, cheeks, eyes, forehead and scalp. And the medicine/ointment that had worked fairly well in the past, hasn't been as successful this time around - especially with regards to his face. And with this particular medicine I can't treat his hands or his eyes because his hands are always in his mouth, and the medicine can't go into his eyes... so without treatment, they get worse. And the areas I can treat, haven't been showing signs of improvement.

His sensitive skin has been an issue for a while, and just as I was about to be discouraged by the need to have to continue to pray for the rash to go away, these verses reminded me that there is reward for persistence. So I thought of you - my blog family - and wanted to ask if you'd once again join us in praying for Ethan's rash to go away. I am really concerned about his face, especially his eyes. They are just so very red and look irritated. The rash and bumps have just about covered his entire face and it breaks my heart to see his skin attacked in such a way. Which brings me to the other side of this prayer request.... I believed I've mentioned before that we've started weaning his final medication (called cyclosporine). The medication that is supposed to prevent graft-verses-host-disease (GVHD), and he has to be fully off of this medicine before he will be allowed to be in public places and around people again. So, I suspect that the doctor's reaction will be around the fact that since Ethan's been weaning off this medicine, and the rash has gotten worse, then he's probably not ready to be weaned.... which would keep him in isolation that much longer.

So....I'm praying 1) that the rash starts to show signs of immediate improvement, especially around his eyes and face and this GVHD on his skin will clear up and be a non-issue & that 2) he can still be weaned as scheduled with no complications. So that we can look forward to a wonderful summer together without any restrictions!

We're supposed to be going to Boston tomorrow for his check-up, but we're expecting a rather large snow storm overnight tonight (up to 15 inches!) so I bet we reschedule. But that could very well be a blessing in disguise, because if Ethan's doc saw him tomorrow, she may make a judgement call on extending Ethan's medication time frame.... so having to reschedule the appointment means we'd have an extra day or so to let the Lord work first!

Thank you for your prayers.... I really wish you could know how overwhelming grateful we are for each one of them.

peace

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.

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.

cell phone cameras sure are handy....

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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....

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

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Looking for a new adventure....

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Look at me! I crawled inside!

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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....

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Look at my chest! Just a tiny band-aid instead of a very long tube! I'm a free man!!

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Just a glimpse into our some of our days.... Good times!!

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Every good gift and every perfect gift is from above,

and comes down from the Father of lights.... James 1:17

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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....

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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.

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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.

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.

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)!

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!

happy valentine's day!

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


Wow.


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

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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....

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.
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Until recently…..
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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.
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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