Friday, May 29, 2009

please pray!

Please be in prayer for my friend Elaine & her husband. They've been preparing to get their baby girl who was born a few days ago, and the birth mother is going through some emotional trauma with her initial decision. Please pray..... Elaine has had a long journey with infertility and a beautiful adoption process was started. She and her husband have waited and prayed for this child, and have already bonded with the sweet baby girl, as they were in the room while the baby was born. The birth mother was very excited to have her baby go to the Sheldon's because she is unable to properly care for her (for many reasons), but is now questioning all the previously made decisions.
Pray likewise for God's comfort to be with all those involved...

Tuesday, May 26, 2009

pictures first, then the commentary...

Sitting in church... what a big boy!

First picnic... and first outdoor swing.... his new favorite thing!

Fun at the Library.... lots of climbing, falling, and giggling!

As you have just seen, life has been busy these last couple of weeks, but it's been the woohoo-this-is-a-fun-new-way-to-spend-our-days-cuz-finally-we-get-to-be-out-and-about kind of busy!
Ethan's had many "firsts" as well. His first trip to McDonald's. Didn't play in the 'play area', but he got to enjoy bits and pieces of a happy meal with mommy. He did get to play at the library, though! They have a baby/toddler play room fully dedicated to children Ethan's age. There was one point that Ethan just laid down for about 30 seconds after playing, then popped right back up and got started again! The few times we've been, we've been the only ones there and I was grateful since Ethan can't quite be around other kids just yet. And you know I was a happy momma when I saw a tub of disinfecting wipes there in the play room. God was thinking of me and little E. And we're looking forward to "toddler time" at the library this July! Can I just say what a blessing it is to me as a mom to be able to do this stuff with Ethan now. We've had to wait so very long to do this type of stuff and it's just wonderful. Absolutely wonderful to be a family enjoying life - together. And finally, Ethan had his first picnic yesterday! Which then led to his first ride in a swing. Let me tell you, he LOVED that swing! And yes, I did wipe that down, too *smile* - still gotta protect that immune system!
Side note: Did you know clorox disinfecting wipes come in a "to go" pack? You better believe I've got one in my purse, one in the diaper bag and several back ups in the cabinet! I don't go crazy... just cautious. I do expose him to some things that have potential germies hangin' around just to see how that new immune system is working and all I've got to say is "all systems are a go!"

Oh, and he had one more "first", well, "first in a long time". Ethan went to church with me and Adam for the first time in over a year, last Sunday night! That was our first time to be at church all at the same time, as a family since April 2008. Our pastor announced Ethan's presence, and the congregation went into applause for him and for our great God. He can't go into the nursery just yet, but he sat back there in between Adam and myself and did a great job! Playing and eating snacks, and babbling, of course, but a great job!

I praise the Lord, because Ethan's life is a beautiful testimony to His grace & power. And, for that, we have gratitude in our hearts that words will never be able to fully express.

Wednesday, May 20, 2009


It's a bit of a somber day for me. Actually, for many people I know. It's one of those things that you want to rejoice for the person who has gone on to be alive and well in the comforts and beauty of Heaven, but your heart is so heavy (so terribly heavy) for those left behind to walk the rest of their life without that loved one by their side.

I attended a beautiful funeral this morning. I say beautiful, because the presence of the Lord was evident. But it was a funeral. A friend passed away. Her husband gave one of the most touching eulogies I've ever heard. His love for her, his devotion to her, his expression of his adoration for her... and his dependency on the Lord... made such a mark on me today. And I trust it did others, as well.

I left the funeral, very somber. I realize that's not an unusual feeling after such a service. But, I tend to bounce back from things like this rather quickly. I'm not sure why, but I'm pretty good at pushing things aside. My old psychology professor would say that I have very good defense and coping mechanisms, however, I think it's more like I can tend to be a bit jaded at times. Not too much surprises me; not too much shocks me. For very long anyway.

But today, I can't stop crying.

It's seriously been hours now that the funeral ended, and I'm still crying. I've only now realized, as I sat down to the computer, that these tears are those of cleansing. Yes, I'm truly sad for the husband who lost his wife. Heartbroken for him, actually. But these tears run deeper than that.

This has been a season of sadness for so many people that we know. And many that we don't know, I'm sure. And, there's never a guarantee as to how long such a season may last.

I've already mentioned that I can tend to push things aside - or even down deep inside - but you can only hold things in for so long. And today, whatever was lurking in the corners of my soul; my mind, came flooding out. I was apparently in need of a cleansing and didn't really realize it.

As a Christian, I believe in God. I believe in His divine plan for all of us. I believe in His lovingkindness, His mercy, His grace and His power. As a Christian, I also know that He allows things to happen in our lives, not as punishment, but because we live in a world where bad things happen. Sad things happen. Heartbreaking things happen. But because I'm a Christian, I know that He won't allow me to suffer without His intervention. I can rest in knowing that He has things working for my good, even when there's no good to be immediately seen. I am a Christian, because I know Him. I know He loves me. I've seen His handiwork throughout my life. And I can say, without a doubt, that I could not get through these moments of "cleansing tears" without knowing that He's the One restoring the broken pieces. And, if you've followed this blog for any length of time, you'll know that I have had many reasons to let the tears flow... but you'll also know that I've experienced the comfort of the Lord and His inexplainable peace during the most difficult of moments. So, I will cry it out. However, much is hiding in this overwhelmed heart of mine. I will cry it out. Then I will stop. Hand it over to the Lord's care, and trust Him to redeem it all. I know He will. I know He is even now.
Bless the LORD, O my soul;
And all that is within me, bless His holy name!
Bless the LORD, O my soul,
And forget not all His benefits:
Who forgives all your iniquities,
Who heals all your diseases,
Who redeems your life from destruction,
Who crowns you with lovingkindness and tender mercies...
Psalm 103:1-4
May I also be so bold as to say something else? Be kind to each other. Our life here on earth is so very short. Be merciful to those around you. Be forgiving of others. Give the benefit of the doubt, before jumping to conclusions. Enjoy the life you've been blessed with... you may think something is lacking, but I bet there's something to be thankful for if you take a closer look. And finally, the most important thing I could say here is, if you want to life beyond the grave, find Jesus. It's not about 'religion'. It's not about what you can "do" to earn your way. It's about the relationship He provides. The redemption He provides. The presence He brings to your life on earth, and the gift He gives your life after your time on earth is over. Again, if you've been reading my blog long, I trust I've built a small level of credibility in your mind. And if that's the case, then trust me when I say, your life will never be the same. Of this I'm sure.
If it is possible, as much as depends on you,
live peaceably with all men.
Romans 12:18
And he brought them out and said,
“Sirs, what must I do to be saved?”
So they said, “Believe on the Lord Jesus Christ,
and you will be saved...
Then they spoke the word of the Lord
to him and to all who were in his house.
Acts 16:30-32
Grace, mercy, and peace,
which come from God the Father and from
Jesus Christ—the Son of the Father—will continue to
be with us who live in truth and love.
2 John 1:3

Tuesday, May 12, 2009

an update to this morning's post

It's 9:00 on Tuesday evening and I just got a call from Ethan's oncologist here in Connecticut (these doctors put so much time and energy into their patients' lives and I'm so thankful for them and the late nights they put in!). And I was simply relieved to hear that he was just as "unsure" about the need for Ethan to go on Accutane for year, as I was. He mentioned that the decision initially came from Ethan's oncologist in Boston, because it is a protocol they follow with their in-house JMML patients in years prior. Our Connecticut Oncologist questioned the rationale as well, and isn't fully convinced that this is a necessary step since Ethan's showing no signs of relapse. He's going to instead suggest that we have Ethan's blood tested at his next Boston visit (June 8th) to see if he's still showing all donor blood cells (and none of his former cells - they judge this by the blood type). Apparently this is not a routine test that's done. If all signs still point to 100% donor cells in Ethan's body then he doesn't believe further action is needed. If for some reason he's showing some of his old blood type, then the Accutane may be something we want to consider since that can be a sign of relapse. Needless to say, I'm much more comfortable with this approach... and much more at ease now that I know our local oncologist has just as many reservations about this as I do. He said he needed to be completely convinced that Ethan needed the medicine and that a bit more due diligence was in order.

If I haven't said it before, I'll say it now... I couldn't be more thankful for the Connecticut Childrens Medical Center oncology staff and their oncologists. They are so easy to work with. So very caring. And take each patient as seriously as if they were their own child. I'm pleased as punch that Ethan's local doctor and I are on the same page about this.

So now, we just have to make sure that in June, Ethan's blood is showing 100% donor cells! But God's got that under control, right! No matter how many butterflies are in my tummy right now just thinking about what I'd do if they said he's showing two blood types... guess I gotta re-read my below post from earlier today before I go to bed!


I've not yet heard from Ethan's oncologist regarding the rationale behind the protocol calling for JMML patients to receive Accutane for a year... and... I'm not really complaining. I'm enjoying living in denial about having to make a decision about this. So as far as I'm concerned, no new is good news.

The Lord has been busy working in me, though. And I'm more convinced than ever before that Ethan's Journey is a story of Faith. And not in the broad sense of the word (like religious belief or affiliation, as in "what is your faith"), but in the very specific sense of the word. The Biblical sense of the word. Hebrews 11:1 defines faith as, "the substance of things hoped for, the evidence of things not see." To break it down even further, God's Word is telling us that Faith is having confidence of things we hope for, which enables us to be assured of those things that we can't see yet. (You may be familiar with the phrase, "walk by faith, not by sight"?) Believe in God's power to accomplish what you can't see yet. Walk by such faith. Instead of thinking that you must "see it to believe it".

I believe in my heart, like I have all along, that Ethan's story is simply a testimony towards faith. Faith in God. Faith in His Word. Nothing else explains it. Nothing else can take away from it. Early on in Ethan's diagnosis and immediate treatment, through the verse a friend gave me, I decided to challenge God. Not in a disrespectful way, I assure you. But I had long read verses like, "whatever you ask in my name, believing you will receive it", or "if you have faith even the size of a mustard seed, you would be able to tell the mountains to move into the ocean and they would do it" (those are completely my paraphrasing, however you get the idea). And I desperately wanted the rewards of such faith to happen in our lives. So that's how I approached each day. I certainly had moments of giving up. You only have to look back at some of my posts from last year to see that. But I kept clinging to the verses you see on my blog. I kept clinging to faith in God's power. I put "faith" to the task of revealing the truth in God's Word. And I'm unashamed to tell you - that God was faithful each step of the way. I would believe that Ethan would continually to better. Simply because God would make good on His promises of faith in Scripture. When we decide to step out in faith, we have the harder part. Blind faith - faith against the resistance or doubt of others - is not easy to always maintain. Think of Peter stepping out of the boat to walk on water towards Jesus. But I promise you this, God rewards our faith in Him. I believe in my heart that Ethan's healing is the reward of us daring to put trust in God's promises on faith found throughout the Bible.

It should be noted that I'm not suggesting that when miracles do not happen for those of us in this world, that it was not a lack of faith on that person or family's part. I'm simply stating what I believe to be specific to my family's situation. God has reasons for all of our trials. And the message of our individual "stories" are different based on His plan for our individual lives. I can only speak so boldly about the workings the Lord has revealed in my own heart. I would never want to imply His working or reasons for someone else's life. We are all unique. And even though trials may be similar to others, the plan the Lord has in those situations is specific to the factors surrounding the individual and those around them. But I am bold enough to say that He does reveals Himself to us. We don't always know the timing, the "why's", or the reasons. But He does reveal Himself in the midst. And He restores what's been broken or lost.

So basically, that's it. I'm not giving up. I'm daring to continue on. Ethan's been healed. And that's the end of it. His life will flourish. With or without preventative chemo-like medication. His life will beat the statistics of long term side effects that are supposed to hit him later in life.

His life is and will be the unending miracle of God.

One of my favorite quotes is, "Faith is not believing God can do something, it's KNOWING that HE WILL". I even have a plaque saying those words hanging on my kitchen wall. It sounds too easy. It feels like you're living in a sort of denial about the reality of your situation. But in all honesty, it should be that easy. Because God's not asked us to fix the problem. He's not asked us to get caught up in the emotional war. He's only asked us to have faith in Him. And believe His Word. He does the rest.

I have a "blog friend" who has her own story of faith. Completely different from our own journey. And her lessons on faith are specific to her and the Lord's work in her life (which haven't been easy), but man, it's a beautiful story. And it's another story of faith in God's Word, and His reward for daring to believe Him. Get to know Elaine and get to know more about the wonderful God we serve.

Sunday, May 10, 2009

happy mother's day


Before I was a Mom,
I never tripped over toys
or tried to remember words to a lullaby.
I never thought about immunizations.
I didn't worry about who might
be following in my footsteps.
Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control
of my mind and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes
and cried myself.
I never got gloriously happy
over a simple grin.
I never sat up late hours at night
watching a baby sleep.
Before I was a Mom,
I never held a sleeping baby just because
I didn't want to put him down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone
more than I loved myself.
Before I was a Mom...
I never knew that I would love being one.
author unknown

Thursday, May 7, 2009

just.... give me a minute

Well, the only way I know how to begin this post is to start from the beginning of yesterday. Everything started out just as it always does. Ethan waking up at 5:45 or 6:00 in the morning, and me dreading getting out of bed. Change a diaper, say hi to daddy while he's shaving and getting ready for work, then head downstairs. Put Ethan in highchair with dried yogurt bites and dried fruit, while I stumble to the fridge to make up a bottle. Habitually walk over to the TV to start a "blue's clues" dvd. Go back to the kitchen, grab a diet dr. pepper (yes, at 6:30 in the morning!), grab bottle, grab Ethan. Head back to the living room with the highly energetic dvd playing in the background and my likewise highly energetic son jumping on me as I still struggle to wake up.

See... just like every other morning, yesterday was no different. Insert the minor fact that we had a hospital visit later in the morning, but still, we're used to those. No big deal (well, aside from the screaming that ensues when mommy and 2 nurses hold little E down during the attempt to draw blood!).

Looking back, I guess I should have seen this coming. A weak link in my faith. Do you know the whole saying, you're only as strong as your weakest link? Well, I'm ashamed to admit that I am acutely aware of the truth in those words.

I'm not sure how this whole scene will come across to you, but to me, it completely shook me up.

Ethan sees a Nurse Practitioner when he has his routine visits in both Boston & Connecticut. There's really no need for him to be seen by his Oncologists there since he's been doing so well, and each of his Nurse Practitioners are excellent and I have a great relationship with both of them. Well, his NP in Connecticut stepped into our room to begin his exam. And after our usual chat about how Ethan has been doing, she asked me if I had signed a waiver for Ethan's next phase of treatment. I stared at her with a blank look on my face. She asked if either of the doctors there in Connecticut or Boston had mentioned to me about the protocol calling for Ethan to start back up on his at-home chemo treatment (Which is actually, Accutane. A medication adults take for acne, but works very well as a form of chemo for certain kinds of leukemia. Ethan was on Accutane last year before his transplant). The protocol we've been following for Ethan's JMML apparently also calls for a daily dose of Accutane for a year as a precaution. Needless to say, this was the first I'd heard of this piece of the protocol. The NP thought I'd already been briefed and felt horrible to spring this on me. And unfortunately, she didn't have the background information on the reasoning for this step to properly answer my questions.

All of a sudden I start crying.

She then feels even more horrible.

It's not her fault.

It just took me back to a place I never wanted to go. "Chemo". Cancer. Ethan. It was all just hitting me all over again & I lost it.

I needed a minute.

I asked the most obvious question that was in my mind. "Is he showing signs of a relapse?" I could barely get the words out. She immediately assured me that NO, he was not! His blood counts continue to be fantastic. So then my next most obvious question was why would they use a chemo-like treatment if he's healthy? She said it was just a precaution that the protocol calls for and that previous JMML patients went on Accutane, every day for a year, and had long term remission success. My third most obvious question was, "how do you know that they wouldn't have had long term remission success without the Accutane?" She didn't know. But it wasn't her fault, either. She walked into a situation in which she was told the doctors had already discussed this with me, so at this point she was just doing the best she could on limited information. Ultimately, the doctors believe this is a necessary step, otherwise they wouldn't have suggested it. And the protocol calls for it. But at this point, I am not at all comfortable with this. I don't understand giving a healthy baby a highly toxic medication every day for a year just as a precaution.

I need to better understand this.

I'm currently waiting for the doctor to call me and explain the rationale. But I must be honest, I'm not at all looking forward to this conversation. It reminds me of the lengthy conversations we had about whether or not to remove Ethan's spleen. The protocol suggested it, but the surgery was very risky. I didn't have a peace about going through with it and in the end (after much thought, consideration and discussion) the doctors and surgeons agreed that the surgery posed more risk to Ethan's health then leaving in the spleen with the potential risk that the radiation treatments wouldn't eliminate all of the cancer hiding in there. Thankfully, today Ethan is cancer-free AND has a healthy spleen fully intact.

So here we go again. Another heavy item on the table. Another thing to weigh and consider. And I'm just not happy about it. I've been upset ever since our appointment yesterday. And why? Nothing has changed. Ethan's still in as good of condition and health as he was yesterday morning, and the day before, and the day before that. His blood counts from yesterday's visit were fantastic. So what has changed?

My weak link.

Like I mentioned earlier, I shouldn't be surprised. I should have seen this coming. An attempt to attack my faith. An attempt to shatter it. A foothold in the door was all that was missing. And yesterday doubt and fear quickly found their way in.

I'm struggling to fight against it. The miracle is mine. He who promised is faithful. I'm determined. But today, I'm weak. I remember too much. Things I had mentally moved past, thinking that phase in this trial was behind us. I just can't bring myself to accept putting Ethan back on a form of chemotherapy used during his initial cancer treatments, when he doesn't have cancer. I just don't understand the need. I don't want to accept that someone somewhere believes that his remission might be short-lived. I refuse to accept it.

I just keep crying at random points throughout the day. Just shaking my head no.

The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.


Please God! Point me in the direction of truth. The treatment is optional, but I know they will try to convince me it's necessary. But I'm not moving unless I feel Your peace. But help me take the emotion out of it. If it's necessary according to You, that Ethan be put on chemo for a year, along with all the horrible side effects, then I trust You to give me the strength to "okay" that. But if this is simply the wisdom of man's best guess and NOT in Your plan for Ethan's body & recovery then give me the strength to follow through on that and allow once again for the doctors' opinion to be swayed. Restore my faith. Strengthen my resolve. Give me peace. And assurance of everything I've long believed about Ethan's journey.

Please pray that Adam and I have wisdom as we hear from the doctor over the next few days and likewise then have to make a decision.

1 Cor. 2:5 - ... your faith should not stand in the wisdom of men, but in the power of God.

Repeat as often as necessary.

Wednesday, May 6, 2009

doctor appointment today

It's time for Ethan's monthly check up. In a couple of hours we will head to the Connecticut Children's Hospital for some blood work. I'm not looking forward to the whole experience, and I'm sure it's safe to say Ethan isn't either, however he's blissfully unaware at this point in our morning routine! Pray with me that they will be able to draw the blood from his arm, or finger, successfully the first time and that Ethan experiences as little trauma as possible. Please pray also for some insight/suggestions on how we can treat the severe dry skin Ethan has throughout his scalp. He scratches so much, he makes his scalp bleed. And right now, the creams they've suggested haven't helped.

All in all, though, I expect good results from his visit today & I'll update with details tomorrow!

I'm also very curious to see if he's gained any weight. We've been trying to make strides in his eating habits, so we'll see today if any of it has paid off over this past month!

Enjoy your day... and thank you for praying!

Monday, May 4, 2009

a borrowed thought & an ethan update

I wanted to share with you the thoughts I borrowed from my former boss from my college days. I asked him if I could share with you, what I thought, was one of the most simplistic yet profound explanations of God's Will for our lives versus our own. He (Eric) said I could borrow his "thoughts" as long as I mentioned what a wonderful boss he was "back in the day"... and well, he was. So thanks, Eric, for sharing your heart and letting me pass it on...


My Worst Fear

I may have mentioned it to you before, but my worst fear is a movie.

I get to heaven and God sits me on a couch. He gives me a Coke and some popcorn and says "Watch this". The movie I watch lasts for four hours, but it seems like it only lasts 15 minutes.

There's action/adventure/romance/comedy/ethical dilemmas all wrapped up into the best movie I've ever seen. The leading man is making all the right decisions and and all the right choices. Its the best of each movie I've ever seen in my life all wrapped up in one movie.

When the movie is over, I ask God "What was that all about? Who was that actor? Who's story was that?" He turns to me and says "That was your life. The life that I wanted you to lead. I wanted you to be all of that and do all of that...but you chose something else. Where you didn't recognize your life in this movie is where you chose your own way. I wanted the best for you, but you chose otherwise."

My fear is that I won't recognize any of that movie. I fear that I will have chosen all along the way and never realized the plan that God had for me. Its not only my fear for me, but its my fear for my family and friends. I don't want them to miss out on God's plan for their life. I want them to be able to lead the life that God has for them with reckless abandon.

Be thankful that your "movie" is not done. Pray every day that God will open your eyes so that you'll know where His Will is for you and that you'll humbly obey.

When he calls to you move, then move. And when he says "stay", don't move an inch.

As for an Ethan update, I must tell you things have been going great! We've been to all kinds of places - even restaurants - and he always does such a fantastic job in whatever the environment. I believe he enjoys all of the "exploring"! We're still very careful about him being in large groups of people, or in close contact with people outside of family, but it's such a whole new world for us as a family.
He's showing no signs of illness or sickness, which indicates his immune system must be working well. However, he'd been a little out of it lately because his 4 molars are coming in all at the same time, and of course, feeling yucky during those moments are to be expected.
I will say, though, that having been in the "cancer world" for so long with him, I'm a bit uneasy when he shows signs of not being quite himself. Reason being, I'm completely unfamiliar with "normal" baby highs & lows. So when he started acting lethargic and had a dip in his otherwise lively personality the other day, I did struggle with remembering that that was how he was acting the day we got his leukemia diagnosis. Fear and worry were hot on my heels all morning, but the Lord's love was even more so. Scripture verses flooded my memory & I kept asking the Lord to point me towards the truth. And sure enough, I felt around that little mouth of his and I felt 4 molars (2 on each side) coming through.
Relief came, followed by my tears from just mentally reliving the whole experience of his diagnosis last year... and then came thanksgiving. Because, yet again the Lord came to my rescue - in a very personal way... He knew what mental road I was quickly traveling down, understood why I would go that direction, but sweetly reminded me that this was simply a "normal baby phase". I'm in the normal baby phase of our lives. It's amazing to think about.... and it's a good place to be.
A great place to be.
But still takes some getting used to... *wink*.