Monday, February 2, 2009

ethan update

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

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

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

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

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


...so much I am thankful for...

6 comments:

Nancy said...

Wow! What an amazing step for Ethan! I will certainly be praying that all goes well as he comes off this medication. Did the doctors give you a time-frame for when this GVHD could show up? Is there an "all-clear" date when they decide that the GVHD isn't or won't be a problem or is it something you will always have to be watchful for?

As always, we will continue to pray!!

Courtney said...

We will continue praying for your sweet baby boy!! As you certainly already know God is good all the time!

Dave and Elaine said...

It has been such an encouragment to me to follow Ethan's story. I will continue to pray for him as he comes off this medicine.

Lizzie Fish said...

this is amazing! what an amazing answer to prayers - we'll be keeping your sweet boy in our prayers through this next step in his miracle journey.

Moz + Pam said...

As always praying for Ethan daily! Wow! What an answer to prayer! How far Ethan has come, huh? PRAISE THE LORD! Amen & Amen!

Following Him said...

WOW!!! I am so excited for Ethan and you guys!!! Prayers go out to the little STAR and I will continue to pray for him :)
~Elyse~