Friday, May 29, 2009
Tuesday, May 26, 2009
Wednesday, May 20, 2009
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.
Tuesday, May 12, 2009
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!
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. http://twosheldons.blogspot.com/
Sunday, May 10, 2009
Thursday, May 7, 2009
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
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
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.