Just kidding…. I’m dying to write to you and to publicly express God’s perfect goodness once again. As I mentioned a few days ago, we were told to prepare to expect Ethan to have a pretty rough weekend. We were told to anticipate fevers, chills, extreme irritability, hives and flu-like symptoms. With tears in my eyes (what else is new), I want you to know that not one - NOT ONE - of those symptoms or side effects were at all present in Ethan’s body or demeanor thus far! The steroid medication and the ATGAM medication (which is a horse hormone used to suppress the immune system - yes, I said horse…) are the medications that typically cause one or all of the above referenced side effects. He started them on Saturday and he will get his last round this afternoon from 2:00 until 8:00, then this phase will be completed. I am so thankful to the Lord for his obvious protection and favor upon Ethan!! I am so happy he didn’t get a fever in particular, because if he had gotten a fever during this part of the treatment regimen, he’d have to have started on 2 to 3 antibiotics that he’d have to STAY on throughout the next several weeks. These antibiotics are extremely strong and can cause long -term complications with hearing loss and kidney failure… that’s not always likely to happen, but a possibility… but it’s something we didn’t even have to give a second thought because Ethan didn’t have any spike in his temperature readings (and it is checked every hour!) And the amazing thing is that fevers are basically always a side effect…. but not when God says mercy and grace says “no“….
Thank you, Lord. Thank you, Lord. Thank you, Lord. Thank you, Lord.
Before I go any further, you need to know how much your prayers play a crucial and critical role in Ethan’s life. I am often quieted and in awe at the prayers being lifted up, literally around the world, for our little boy. By people who know us and by people who’ve only “met” us through this blog site. That you’d even give our family a second though, let alone a third - fourth - or fifth! Is simply and truly amazing to me. I pray God’s blessing and favor be with you and your family as a reward to you for your diligence and faithfulness to continually come to Him on behalf of us. I do not believe there is a sweeter gift you can give someone than to really pray for them. Thank you such a wonderful gift you continue to give us.
Let me also say thank you to those of you who have sent us cards and who have even given gifts of generous measure. I’ve not had an opportunity to contact you directly and “thank you” for your kindness, but know that you touched our hearts and blessed us in a great way!
In addition to the medications I mentioned earlier, Ethan also went through 2 rounds of chemo over the weekend. And not one complication or side effect resulted. He has been in a perfect mood every single day. Playing, laughing…. Completely being himself, as you can see in the pictures I’ve been taking the last couple of days (be sure to take a look at them at the bottom of this post). His appetite has even stuck around, too! We were told to expect him to stop eating by now, either due to loss of appetite or due to mouth sores…. and yep, you guessed it…. neither are a problem for him yet! I just can’t process all that he’s been through and how EXCELLENT he has done. We were thinking he’d be sluggish and lethargic by now - but that is definitely not the case! He’s a little sleepier than normal, but that’s fine with us, because the extra rest is good for him…. and I’d much rather him be sleepy than cranky/miserable. I wish you could see how well he is THRIVING throughout all of the junk his body is having to endure. You’d never guess this child was about to get a cord blood transplant TOMORROW!!!
Speaking of, Adam and I are getting some balloons from the gift shop tomorrow to mark the special day. They had a Red Sox one the other day, but I think someone already bought it. It may end up being Nemo, Mickey Mouse, Elmo or something like that, but regardless, it’s a day to celebrate! And I couldn’t resist a few new toys for him, either! Be in prayer that the transplant settles easily and quickly into Ethan’s body and that he does not reject the new donor cells. It will take a few weeks before we know, but proactive prayer is always appreciated!
With Ethan doing so well this weekend, Adam and I were able to steal away each afternoon and go for a walk exploring our new area & get out for dinner each night. (Adam is here until after Ethan’s transplant tomorrow). All in all, everything is going so wonderfully well with Ethan. He’s tired sometimes, but that’s to be expected. But he still has such a very active and smiling personality!
Thank you for praying for us. Thank you soooooooooooooooooooooooooo much for that! You are getting us through this, each and every day, by asking the Lord for His abundance to be given to our little boy…. And He has been generous in His giving.
Praise Him! Praise Him! Praise Him!
As usual I have more in my heart and mind that I want to share, but I’ll save it for another day. I am across the street at Starbucks sending this to you because I still can’t login to the website in the hospital… and although I’m enjoying the atmosphere and the view and the green tea here at Starbucks, pray that this situation can get correct today, so I can login whenever I have a free moment in the room.
Thank you, Lord, for Your powerful kindness to Ethan this past week. I sometimes fail to ask You for things, or think that I shouldn’t ask You for things because I don’t deserve such favor or blessing… but I’m trying to fully grasp that there’s NOTHING I can do to deserve anything from You. And yet, that doesn’t stop Your desire to give… to love… to amaze. Thank you that this unworthy vessel is continually covered in Your grace. Thank You that Your mercies are new EVERY morning. Help me not to miss this, Lord. Help me not to miss what You need me to do because I can’t get out of my own way. Create in me a clean heart…. And renew a right spirit within me.
P.S. - Several have asked us for an address here at the hospital, I am happy to provide that to you! Please note, however, that we cannot have plants or flowers delivered to our room. Due to the potential fungus and bacteria that plants/flowers can harbor, they aren’t allowed on near around the transplant patients and their suppressed immune systems. If you have our home address, Adam is still home during the week, but if you want to reach me or Ethan at the hospital please feel free! Just use the address exactly as follows (use Ethan’s name as he is the patient).
Children’s Hospital Boston
Patient: Ethan Krawiec, 6 West, Room 603
300 Longwood Avenue
Boston, MA 02115
Another P.S. - Thank you for praying for our friends Mike and Amy Lee & their daughter Micaiah (still in the womb). The newest information based on the recent ultrasound is as follows - copied from an email sent from Amy:
1. The cyst is still there, though very small. However, the size of the cyst was never measured to begin with (that we know of) so we're not sure if it's the same size or smaller. We are fairly certain it's not bigger just b/c it is so small (2 mm). 2. There is now fluid in both of her kidneys, though not a large amount at this time. So what does all that mean? We don't know. We went from having one potential marker for Down's to two potential markers. So that much isn't "good." But it doesn't necessarily prove or mean anything at this point yet either. So she still could be healthy (not have Down's). My doctor is now more concerned about the kidney issue than the cyst. Even if Micaiah doesn't have Down's, it could still be potentially dangerous to have fluid in both kidneys. Therefore, we have to go see a specialist in 3 weeks to have yet another ultrasound. This type of doctor specializes more in high-risk pregnancies and complications. The ultrasound will be more thorough/detailed. As of this point, our biggest prayer request is that the fluid in her kidneys would go away (ideally). At the very least, we don't want the fluid to increase. If it increases, it could pose a problem to her regardless of whether or not she has Down's. If the ultrasound shows that the kidney problem has gotten any worse, then the problem will have to continue to be tracked the rest of my pregnancy and potentially they will have to deliver her early.
Continue to keep Mike and Amy & their little baby in your prayers.
ONE LAST THING.....
Say Hi to our little man!