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.


Twice Blessed said...

Praying that prayer with you!

NovelTeaMommy said...

My heart aches that you've been hit with this storm in the middle of your beautiful Spring. Praying for peace and guidance for you and your husband.

Lizzie Fish said...

I am so sorry that happened. We'll be praying that the doctors are clear and that you have peace about whatever decision you ultimately make. I cannot imagine what this feels be jerked back to such a hard part of your journey. We'll pray for you and will wait for news!

Kim Weber said...

Kasey and Adam, I will make sure my family and I lift you and yours high up to the God of All Creation. I am so saddened to read of this 'decision' you have to make. Remember that God is in control, don't let satan get that foothold on your mind...Pray and Fast together and God will confirm that what ever you tell the doctors will be the right one and you will never look back to re-think it. "Oh God, please give Kasey and Adam true and lasting peace as they make this next, huge decision in Ethans life, help them Lord hear what words the doctors say, give them clarity of thought, and give the doctors, Lord, clarity of speech to explain everything they need to know. Lord, you know the heart of this little family and the struggles of the past year. Comfort Kasey Lord, help her keep the doubt and fears out of her mind and have peace take over. Lord we trust you completely in this and all our matters. Amen."
Love, Kim

Michelle Riggs said...

Pray for everyone involved and for complete healing for your son.

Anonymous said...


So very sad to hear of this new bump in the road for your family. The good news is that Ethan is still healthy and able to get out of the house more. I don't envy you the decision, but will pray for wisdom and most of all, peace of mind for you and Adam.


Anonymous said...

You are leaning on those Everlasting Arms. Praying that you will feel the embrase in a tangible way. Praying for Ethan's complete healing as always.

The Pifer's said...

He is just the cutest thing!!!! I am def. praying for your family!!!!!!!!!!!! God is amazing and he will get ya'll through this hurdle!

carleigh said...

oh kasey, i'm sorry you have to do this! you know you can call me at any time to talk!!!

Shelly said...

why had the doctors not mentioned this to you before??

but regardless of the situation, TRUST IN GOD, as you have been, and ALL things will work out according to HIS WILL!

ETHAN IS A HAPPY HEALTHY BABY! Continue to focus on this!

I will be praying for you, little Ethan and your doctors!

Anonymous said...

Praying for you all Kasey!
God will guide you on what to do and you will have His peace that passes all understanding.
Love you!