I was sharing with a friend via email some overall prayer requests we have for Ethan. I wanted to share them with you as well in the hopes that you will join us in praying over these areas.
1. That Ethan's central line remains infection free.
2. That fluid does not gather in his lungs... which would complicate his breathing and force a ventilator to help him breathe. This isn't at all an issue right now, but we want to avoid this completely! So I'm asking for proactive prayer in this area.
3. Pray he continues to eat well and that he continues taking the medications he has to take by mouth, with no problem (no mouth sores or nausea).
4. Pray that his blood counts start to go up (aka: engraft). The sooner this happens, the sooner we can go home!
5. Pray he remains fever-free after he begins to engraft, as this also helps us along in being discharged.
6. Pray that he will not get a severe case of Graft-versus-host-disease (GVHD). This is an expected side effect of a transplant. It's something that the body goes through as it is in the process of "accepting" the new donor's cells, and is a side effect that we will be watching for in the many months to come. However, it can cause major complications if it became a severe case. (The spectrum of GVHD can be anywhere from mild to severe. We only want the mild version!)
7. Pray that Ethan needs less and less blood and platelet transfusions as he begins to engraft the new donor cells. As this would indicate that his body is becoming more self-sufficient.
Thank you so much for praying over these areas of Ethan's life. We've seen small miracles and unexpected blessings of progress each week.... I selfishly want that to continue!
Psalm 31:1-3
In You, O LORD, I put my trust; let me never be ashamed; deliver me in Your righteousness. Bow down Your ear to me, deliver me speedily; be my rock of refuge, a fortress of defense to save me. For You are my rock and my fortress; therefore, for Your name’s sake, lead me and guide me.
Friday, August 29, 2008
Thursday, August 28, 2008
don't you know by now?
I had an interesting thought in the wee hours of this morning. Oddly enough, I have my most profound thinking on little sleep.... Ethan had woken up, and as I was changing his diaper, he was growing more and more angry. He cried his little heart out the entire time - paying no mind to the fact that I was working as fast as I could to get that bottom cleaned up! And when I say cry, I mean CRY. He was crying so hard he couldn't catch his breath. His face turned shades of red, then purple, in only a matter of seconds. He was completely disinterested with the diaper change and wanted (and I mean wanted?!) a bottle. We go through this bit of impatience occasionally in these wee hour mornings. And as I was about to fasten the final side of his diaper, I said to him, "Ethan, honey, don't you know by now that your I am going to take care of you? We are seconds away from your bottle, but we have to change this diaper first!" I'm giggling as I'm talking to him... in my best baby talk, mind you. Then moments later, as I was sitting feeding him his bottle (his tears, of course, have immediately vanished!) and I had this thought.... "Kasey, don't you know by now that, I, your Heavenly father am going to take care of you, too?"
Wednesday, August 27, 2008
settle down
I started writing this post at two different times yesterday. My time on the computer revolves around Ethan sleeping, so during his morning nap I had a train of thought going that was on its way to being 3 lengthy paragraphs. Then my little child woke up, then it was time for me to go grab some lunch at his next nap, then it was play time... and by the time I came back to what I was writing, I simply didn't feel compelled to finish. My state of mind had changed. So I saved it as a draft and decided I'd wait until I felt my thoughts were more organized. Later in the evening, I sat back down at this computer and started over... this time, my thoughts had come together in a slightly different perspective. But again, mid-way through my attempt at explaining what was on my mind, I had to stop. I stared at the words - and though they were a true and real expression of what's going on in this life of mine - the Lord kept bringing me back to being "still". So I stopped typing again... this time only two paragraphs.
I've tried to figure out what this all meant, and I think I've decided that I'm not sure. There's such a battle between my heart and my mind. My heart knows. My mind questions.
I believe it's completely on purpose that the verse in Proverbs 3:5 says, "Trust in the LORD with all your heart, and lean not on your own understanding."
It takes effort for me to get my mind to settle down. Sometimes my heart and my mind line up with each other and sometimes my mind just taunts. My heart has peace. My mind is restless. There are several times throughout the Bible in which God tells us to keep our minds sober, renewed, and not fixated on earthly things. And likewise, there are countless times in which the Bible makes separate references to our hearts. They are not one in the same. In fact, like I said, mine are often at odds with each other. At least that was the case with me yesterday.
My heart was overwhelmed with thankfulness to the Lord for ALL the blessings He's given to us. With Ethan doing so well, financial support, the continued encouragement... even the littlest of things that He does for me each day.
My mind, however, was thinking about how homesick I have been starting to feel. I miss being at home. I miss driving my car. I miss smelling the cologne that my hubby sprays right before he leaves for work each morning. I miss Ethan's room. I miss the three of us being together.
So as I debated which avenue I wanted to concentrate on for purpose of by post yesterday. I just ended up realizing that I simply needed to be still. Take it all in. Everything. Let the Lord work. Because He is trying to show me Himself. More of Himself. In fact, He's been so very kind in giving me the desires of my heart in many small ways. And I simply need to get quiet. Take it in. And thank Him. Focus on all He has done. Understand that He loves me. That He loves Ethan. That He loves Adam. And we are where He wants us to be. And when His plan is completed here, then we can go home. And everything in between will fall into place. If only I will be still and know.
Isaiah 26:3 - You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.
Lord, God.... You amaze me with your attention to detail to me. Thank you for honoring the prayers of protection over Ethan's body. Thank you so much for Your abundant goodness. I am learning so much more about You. So much that I don't even know how to respond back to You. Forgive me for the moments in which I doubt and forget. And thank You for continuing to look past those moments. Amen.
___________________________
Ethan continues to thrive. He continues to eat like a horse! Docs are still amazed by that. He hasn't started to engraft yet, but he's doing very well in every other way. I could use more consistent sleep, but all in all, there's barely much else to "complain" about. We cannot thank you enough for your continued prayers for him and us. I'm sending a BIG HUG your way today!
I've tried to figure out what this all meant, and I think I've decided that I'm not sure. There's such a battle between my heart and my mind. My heart knows. My mind questions.
I believe it's completely on purpose that the verse in Proverbs 3:5 says, "Trust in the LORD with all your heart, and lean not on your own understanding."
It takes effort for me to get my mind to settle down. Sometimes my heart and my mind line up with each other and sometimes my mind just taunts. My heart has peace. My mind is restless. There are several times throughout the Bible in which God tells us to keep our minds sober, renewed, and not fixated on earthly things. And likewise, there are countless times in which the Bible makes separate references to our hearts. They are not one in the same. In fact, like I said, mine are often at odds with each other. At least that was the case with me yesterday.
My heart was overwhelmed with thankfulness to the Lord for ALL the blessings He's given to us. With Ethan doing so well, financial support, the continued encouragement... even the littlest of things that He does for me each day.
My mind, however, was thinking about how homesick I have been starting to feel. I miss being at home. I miss driving my car. I miss smelling the cologne that my hubby sprays right before he leaves for work each morning. I miss Ethan's room. I miss the three of us being together.
So as I debated which avenue I wanted to concentrate on for purpose of by post yesterday. I just ended up realizing that I simply needed to be still. Take it all in. Everything. Let the Lord work. Because He is trying to show me Himself. More of Himself. In fact, He's been so very kind in giving me the desires of my heart in many small ways. And I simply need to get quiet. Take it in. And thank Him. Focus on all He has done. Understand that He loves me. That He loves Ethan. That He loves Adam. And we are where He wants us to be. And when His plan is completed here, then we can go home. And everything in between will fall into place. If only I will be still and know.
Isaiah 26:3 - You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.
Lord, God.... You amaze me with your attention to detail to me. Thank you for honoring the prayers of protection over Ethan's body. Thank you so much for Your abundant goodness. I am learning so much more about You. So much that I don't even know how to respond back to You. Forgive me for the moments in which I doubt and forget. And thank You for continuing to look past those moments. Amen.
___________________________
Ethan continues to thrive. He continues to eat like a horse! Docs are still amazed by that. He hasn't started to engraft yet, but he's doing very well in every other way. I could use more consistent sleep, but all in all, there's barely much else to "complain" about. We cannot thank you enough for your continued prayers for him and us. I'm sending a BIG HUG your way today!
Monday, August 25, 2008
happy monday
Thank you so much for praying. Your prayers continue to be heard by the Father and answered in abundance. Ethan's breathing and heart rate has slowed back down to normal, he never acquired a fever, and we believe the fluid has left his lungs! I am so thankful. And so thankful for you. When God's people pray, amazing things happen. I strongly believe we could not do this piece of Ethan's Journey with the success that we've been blessed enough to experience, without your gracious help in voicing prayers to the Lord on our behalf. I really cannot thank you enough for that gift. God is truly blessing Ethan's life through answered prayer. You (yes you, reading these words right this minute) are more special to me than you even know. Whether I know who you are or not. Whether I know that you read this blog, or not. I feel you. I know you're out there. I know that when I don't have the strength to even muster up a word of prayer to the Lord... God puts us on your heart, and you speak the words for me. "Thank you" continues to seem like an insignificant way to repay your ongoing kindness....
Speaking again of your kindness, I was in shock to see this morning that our total money raised in support of Ethan for the Jimmy Fund Walk was $1733 OVER mine and Adam's combined goal of $1062. In just a matter of days we have received a total of $2,795 in support of our walk for Ethan in September. Adam and I are extremely honored and touched by your support of the Jimmy Fund Clinic at Dana-Farber & Boston Children's Hospital - where Ethan is currently being treated and monitored and where his transplant protocol was designed. Thank you for honoring our son in such a generous way. Your names continue to be sent to us via email and we want YOU to know how much your support has meant.
Several have asked whether or not Ethan will continue receiving actual "treatments" now that his transplant has been completed, or whether or not he will get another transplant in addition to his first one...
The actual "treatment" phase of Ethan's transplant has been completed. His treatment plan included the 4 rounds of chemo he received in Connecticut, the 8 rounds of radiation and the 2 round of chemo he received here in Boston. All of that (plus a few other medications) were used in order to suppress his immune system and bone marrow from creating new cancer cells and kill off any lingering cells that may have been hiding out in some of his organs - bottom line - getting him ready for the transplant. Now that he has had the transplant, we just wait. We have to wait for the new donor cells to start to grow (engraft) into Ethan's bone marrow and bring new cancer-free life into his cells again. This phase of the process takes several weeks. Once Ethan's blood counts start to go up in number, and stay at a certain level for a few days in a row, then we are able to be discharged. He's not receiving any more chemo or anything that would be used to treat "cancer", because the assumption is that he is cancer free at this point and will continue to remain that way after the new donor cells engraft.
If for some reason the cells didn't engraft, or complications of relapse happened in a few months, we are not sure what would happen (though I believe this is not a bridge we will have to cross), because his body would not be able to handle another transplant regimen again. They do occasionally do a 2nd transplant with leukemia kids if needed, however with Ethan's situation, it's not really an option... at least not right away... because his diseases is so complicated, finding another match would likely not be close enough to help him and the conditioning his body has to endure before hand would be too hard on him the 2nd time around. But again, pay no mind to any of this, because I'm confident that the Lord has us enduring this situation for this point in time.
I just don't believe that any of this is about "cancer". Which is why I don't put a lot of stock into many of the concerns or fears that the disease invites. I do not believe Ethan's cancer is the focus of, nor will it be the final definition of the life he was created to live. I believe his having cancer is to serve the Lord in a greater effort than Ethan being healthy would have done. Which is the ONLY reason this disease was allowed to enter our lives. I believe God is using our little cutie pie to bring more people to Him, to show us His power, and to teach us to really believe. And I'm confident that after this short season of having to sacrifice certain desires... the Lord will restore. And we will be changed. Maybe you will be changed, I don't know. And I don't know the full purpose of Ethan being chosen for this - however, I do know - that the purpose is not unto death, but unto the glory of God. And not just physical death... but death of hope, death of dreams, death of joy.... No. The purpose of Ethan's cancer is not unto death of any of those things, but solely and only for the glory of God. That I might know Him better. And maybe even that you might know Him better.
Lord, I believe Ethan has been chosen to be Your tool - Your open door - to work in our lives and to show us more of You.... continue to protect Ethan's body from all harm as You do your work in us. Help us to watch and wait in excitement.
Speaking again of your kindness, I was in shock to see this morning that our total money raised in support of Ethan for the Jimmy Fund Walk was $1733 OVER mine and Adam's combined goal of $1062. In just a matter of days we have received a total of $2,795 in support of our walk for Ethan in September. Adam and I are extremely honored and touched by your support of the Jimmy Fund Clinic at Dana-Farber & Boston Children's Hospital - where Ethan is currently being treated and monitored and where his transplant protocol was designed. Thank you for honoring our son in such a generous way. Your names continue to be sent to us via email and we want YOU to know how much your support has meant.
Several have asked whether or not Ethan will continue receiving actual "treatments" now that his transplant has been completed, or whether or not he will get another transplant in addition to his first one...
The actual "treatment" phase of Ethan's transplant has been completed. His treatment plan included the 4 rounds of chemo he received in Connecticut, the 8 rounds of radiation and the 2 round of chemo he received here in Boston. All of that (plus a few other medications) were used in order to suppress his immune system and bone marrow from creating new cancer cells and kill off any lingering cells that may have been hiding out in some of his organs - bottom line - getting him ready for the transplant. Now that he has had the transplant, we just wait. We have to wait for the new donor cells to start to grow (engraft) into Ethan's bone marrow and bring new cancer-free life into his cells again. This phase of the process takes several weeks. Once Ethan's blood counts start to go up in number, and stay at a certain level for a few days in a row, then we are able to be discharged. He's not receiving any more chemo or anything that would be used to treat "cancer", because the assumption is that he is cancer free at this point and will continue to remain that way after the new donor cells engraft.
If for some reason the cells didn't engraft, or complications of relapse happened in a few months, we are not sure what would happen (though I believe this is not a bridge we will have to cross), because his body would not be able to handle another transplant regimen again. They do occasionally do a 2nd transplant with leukemia kids if needed, however with Ethan's situation, it's not really an option... at least not right away... because his diseases is so complicated, finding another match would likely not be close enough to help him and the conditioning his body has to endure before hand would be too hard on him the 2nd time around. But again, pay no mind to any of this, because I'm confident that the Lord has us enduring this situation for this point in time.
I just don't believe that any of this is about "cancer". Which is why I don't put a lot of stock into many of the concerns or fears that the disease invites. I do not believe Ethan's cancer is the focus of, nor will it be the final definition of the life he was created to live. I believe his having cancer is to serve the Lord in a greater effort than Ethan being healthy would have done. Which is the ONLY reason this disease was allowed to enter our lives. I believe God is using our little cutie pie to bring more people to Him, to show us His power, and to teach us to really believe. And I'm confident that after this short season of having to sacrifice certain desires... the Lord will restore. And we will be changed. Maybe you will be changed, I don't know. And I don't know the full purpose of Ethan being chosen for this - however, I do know - that the purpose is not unto death, but unto the glory of God. And not just physical death... but death of hope, death of dreams, death of joy.... No. The purpose of Ethan's cancer is not unto death of any of those things, but solely and only for the glory of God. That I might know Him better. And maybe even that you might know Him better.
Lord, I believe Ethan has been chosen to be Your tool - Your open door - to work in our lives and to show us more of You.... continue to protect Ethan's body from all harm as You do your work in us. Help us to watch and wait in excitement.
Sunday, August 24, 2008
prayer request
I noticed when Ethan woke up this morning that he was breathing much faster than normal. I called for the nurse and she was able to confirm that Ethan's respiratory rate and his heart rate was in fact elevated. Shortly thereafter, Ethan had a chest x-ray which showed fluid in his lungs. He is currently on medication to help rid his body of the excess fluid, but I'm requesting prayer that this situation does not reoccur. Ethan is taking in a lot of fluids (between his formula, blood & platelet transfusions, and medications) and we need him to continue to release those fluids on a regular basis (ie: more wet and dirty diapers!). So far, this isn't a huge concern, however we would appreciate your prayers that it does not become more serious.
Friday, August 22, 2008
thank you!
Adam and I want to express our EXTREME gratitude to each of you who have made a donation for our participation in the Jimmy Fund Walk! I still can't believe that by mid-afternoon yesterday, the financial goals that we both set for ourselves, had not only been met, but had been exceeded! In just a matter of hours!! Your continued generosity and kindness toward us and Ethan... well, it often leaves me speechless... just as it did again today. Adam and I receive an email each time a new donation was made, and we got to see each of your lovely names! Thank you.... from the bottom of our hearts.... thank you! We are so excited!!
Thank you also to those of you who have sent gifts to us. The blankets, cards, books, gift cards.... every bit of it has been so special to us. I hope to reach out to you individually soon to thank you personally, but in the mean time, please accept this general note of appreciation for thinking of us in such generous and thoughtful ways.
More exciting news:
1. Ethan's line contamination has cleared up! Thank you so much for praying. He had to get blood drawn from his arm twice this week, but that's it. Going forward they can go back to drawing blood from his central line again. This is such a blessing. Thank you, Lord!
2. Ethan is still not showing significant signs of pain! There have been a few times that I have requested him to get a half dose of pain medication (morphine is what they give transplant patients who experience pain) if he seems extra restless or irritable - just to take the edge off. But he's not needed anything more than that occasional help AND still no signs of mouth sores... which means he is STILL eating like a champ! THIS IS TRULY UNBELIEVABLE because they continue to tell us that NO ONE EVER EATS THROUGH TRANSPLANT because of the significant pain. However our little man is blowing those statistics out of the water. He eats 'round the clock! You don't know how much this, in particular, has blessed my heart. Thank you so much for praying for this area. Lord, You've been so gracious! Everyone is amazed at this blessing. Thank You for that sweet, sweet gift. In faith, believing in Your goodness, I ask this specific protection would not change in the coming weeks.
He is doing so, so, so, so, so great! I wish you could see him. He's so perfectly natural and easy-going. No signs of frailty, no signs of weakness, no signs of a lethargic personality... he is strong, he is lively, he is healthy. Yes, healthy. We have every reason to believe his cancer is gone and these new cells will come in and grow strong and vibrant. It will still be a few more weeks before we start to see the new cells grow, but I don't have to see those cells to know that God is giving us what we have asked of Him.
Tomorrow is Ethan's 7 month "birthday". I cannot believe how grown up our little baby has become. He has changed and blessed our lives in ways we don't even know yet. My cup runneth over...
1 Chronicles 16:9 - Sing to Him, sing praise to Him; tell of all His wonderful acts.
2 Samuel 22:50 - Therefore I will praise you, O LORD, among the nations; I will sing praises to your name.
Thank you also to those of you who have sent gifts to us. The blankets, cards, books, gift cards.... every bit of it has been so special to us. I hope to reach out to you individually soon to thank you personally, but in the mean time, please accept this general note of appreciation for thinking of us in such generous and thoughtful ways.
More exciting news:
1. Ethan's line contamination has cleared up! Thank you so much for praying. He had to get blood drawn from his arm twice this week, but that's it. Going forward they can go back to drawing blood from his central line again. This is such a blessing. Thank you, Lord!
2. Ethan is still not showing significant signs of pain! There have been a few times that I have requested him to get a half dose of pain medication (morphine is what they give transplant patients who experience pain) if he seems extra restless or irritable - just to take the edge off. But he's not needed anything more than that occasional help AND still no signs of mouth sores... which means he is STILL eating like a champ! THIS IS TRULY UNBELIEVABLE because they continue to tell us that NO ONE EVER EATS THROUGH TRANSPLANT because of the significant pain. However our little man is blowing those statistics out of the water. He eats 'round the clock! You don't know how much this, in particular, has blessed my heart. Thank you so much for praying for this area. Lord, You've been so gracious! Everyone is amazed at this blessing. Thank You for that sweet, sweet gift. In faith, believing in Your goodness, I ask this specific protection would not change in the coming weeks.
He is doing so, so, so, so, so great! I wish you could see him. He's so perfectly natural and easy-going. No signs of frailty, no signs of weakness, no signs of a lethargic personality... he is strong, he is lively, he is healthy. Yes, healthy. We have every reason to believe his cancer is gone and these new cells will come in and grow strong and vibrant. It will still be a few more weeks before we start to see the new cells grow, but I don't have to see those cells to know that God is giving us what we have asked of Him.
Tomorrow is Ethan's 7 month "birthday". I cannot believe how grown up our little baby has become. He has changed and blessed our lives in ways we don't even know yet. My cup runneth over...
1 Chronicles 16:9 - Sing to Him, sing praise to Him; tell of all His wonderful acts.
2 Samuel 22:50 - Therefore I will praise you, O LORD, among the nations; I will sing praises to your name.
Thursday, August 21, 2008
ethan's journey
As many of you know, we are currently at Children's Hospital Boston for Ethan's cord blood transplant. The outpatient portion of this hospital and the area in which Ethan's transplant protocol was developed is called the Dana-Farber/Jimmy Fund Clinic. Every year there is a major fundraiser for the Jimmy Fund Clinic in the way of the "Jimmy Fund Walk" (this is event is also in conjunction with the Boston Marathon).
Now that the Jimmy Fund Clinic has become near and dear to mine and Adam's heart - as they are actively working to cure our little boy - we've decided to participate in this years walk in honor of Ethan. We will walk together on September 21, 2008 for our son and this incredible journey he has been on thus far. We've called our little mommy & daddy team, "Ethan's Journey".
I was setting up our registration details last night and before I went to bed, as I contemplated everything that "Ethan's Journey" truly means, I couldn't help the tears that fell down my face. Leukemia. Cancer. It affects so many. And it has affected us. And what a sweet moment it will be to walk with my husband, and thousands of others, for the sake and support of the loved ones in our lives impacted by such a disease. I never thought this would be my path. I never thought we'd be where we are. But it really is okay. And on that day, one month from now, Adam and I will walk with such honor and pride to be representing our son. Each year, we will come back here and do the same.
And one day....
Ethan will walk with us.
And he will be a light of hope to others... I believe he already is.
It's a bit 'last minute' to be joining a fundraiser that's only one month from now, however, I'm trusting the Lord's blessing. The details are slightly tricky, but hopefully, this will make sense. We have created a website through the Jimmy Fund Walk site to help us raise the money for our participation in the upcoming event. This being our first fundraiser for cancer research, we wanted to be conservative, with the hope to grow it each year.
I set up a goal amount for myself of $812 in honor of the date of Ethan's transplant (August 12th). Adam's goal amount is $250 which is the amount that is needed in order for him to be able to participate in the walk. This gives us a total of $1062 as our "team goal amount". All of the donations go directly to the Jimmy Fund (which we support with our whole heart as they are currently taking care of our baby!), and donations can be made specifically "in honor of" Ethan.
The fundraiser site is as follows:
http://www.jimmyfundwalk.org/ethankrawiec
Clicking on that link brings you to a page set up specifically for "Ethan's Journey". You will see my fundraising goal of $812 listed and can add whatever financial support you'd like. If you click on the MY TEAM PAGE, you will see a link with Adam's name. This would take you to his page and you'd be able to make a donation towards his goal of $250.
We weren't at all sure what type of response we might get from this... we just wanted to do this for Ethan... to bring attention to JMML and participate in an event that has become a very real part of our lives. Any donation is a special one to us, and I thank you for even considering providing support. All donations are tax-deductible and you will receive a letter for your records via email directly from Dana-Farber/Jimmy Fund Clinic.
Jimmy Fund Facts:
The Jimmy Fund supports the fight against cancer at Dana-Farber Cancer Institute (Childrens Hospital Boston), helping to raise the chances of survival for children and adults with cancer around the world. Since 1948, thousands of events, coupled with the generosity of millions of people, have helped the Jimmy Fund save countless lives by furthering cancer research and care at Dana-Farber.The Jimmy Fund has been integral to the success of treatment for once-incurable childhood cancers for more than 58 years. Today, due in part to Dr. Sidney Farber's groundbreaking work at Dana-Farber, overall cure rates for children's cancers have reached more than 75 percent (and up to 90 percent for some forms of the disease). More than $400 million has been raised since it was founded in 1948. More than 90 cents per dollar raised is directed toward Dana-Farber's ultimate goal — eradicating cancer and related diseases, and the fear they engender.
... And this now includes our little Ethan.
Thank you in advance for helping us support the fight, cause and cure for childhood cancers. I know our miracle is ultimately of the Lord's goodness and mercy, but, I also know that His goodness and mercy towards us has come through the vessels of the doctors and nurses He has placed in our lives here in Boston... and they will forever have my support and deepest appreciation for their help in restoring Ethan's life.
Please feel free to email me with any questions - kasey_krawiec@yahoo.com
Wednesday, August 20, 2008
today's mood: thankful
Actually, that's been my underlying mood for quite a while now. Adam and I really didn't know what to expect when we were anticipating the details of Ethan's transplant. Would he begin to look frail? Would he stop eating? Would he be in constant pain? Would he lose his active personality? Would he get profoundly worse before he got better? Countless questions. Fearful expectations. But with each fearful thought... each time we wondered what to expect... they were countered with a calming desire to believe for miracles each step of the way.
So here we are. Right in the middle of everything we had been so curious (so nervous) about.
Let's do a mini review...
Back in April, when we first found out about Ethan's illness, I was sad that I'd not be able to stroll him around outside or have fun with him in that way. But I was able to and I did. Many times. I was sad that I wouldn't be able to experience the "firsts" of Ethan eating baby foods or wearing his 'big boy' clothes before we had to come to Boston for transplant. But we did, and have messy pictures to capture the memory!
I was disappointed that I wasn't able to take Ethan for his 3 months portrait, because that's around the time we found out he had cancer. However, when our cutie turned 6 months old, just a couple of weeks before we went left for his transplant, we received the most wonderful surprise of free portraits in a wonderful studio that had been reserved just for us!
Anything I thought might have been taken from my being able to experience various joys as a mother in the early stages of my son's life had either never left to begin with, or were restored to me in more ways that I could have hoped. We've been able to experience anything that a "normal" family would have been able to... though maybe in a different way at times... but we've never been at a loss for memory-making, laughter, or desirable moments.
God is so very good. To the undeserving heart... all the time. Even the things we didn't know we wanted, we've been able to have.
His goodness has continued to be in abundance even through this stage. Ethan has not changed a bit in the ways that we feared he might. He is still very active. Still loves to smile and play. And the most shocking to all the doctors is that he still has a very strong appetite! We had prepared for mouth sores to have taken over his ability or even his desire to eat, and that as a result, he'd be on intravenous fluids by this point. Absolutely not the case! Ethan takes in about the same or even sometimes more formula by mouth than he did when we were at home. The doctors are really very surprised by this. This is such a healthy thing for him if he can keep it up. Some babies forget how to eat/suck on a bottle and their digestive system stops working as a result of the mouth, esophagus and digestive tract sores. This can prolong their ability to be discharged to go home as they have to wean off of the IV fluids and learn to take a bottle again. I am so thankful every day when Ethan reaches for that bottle and downs all of its contents like a pro! This is such a blessing that I didn't even fully realize until we got here and fully understood how great it is that he is still eating on his own. Please join me in praising God for this sweet answer to prayer. I know it's to be understood that this could change in coming weeks, but I know God loves to show His glory through answered prayer. Please continue to be in prayer that sores and ulcers would not be a factor in Ethan's appetite and that he'd take a bottle throughout this whole process. I love seeing the amazement in the doctors and nurses when they see how much he at the previous day... and I'd LOVE to see that continue.
Thank you also for praying for Ethan's line to clear up. According to reports yesterday, the medication level in his one line has cleared up considerably! He will probably only have to have blood taken from his arm/hand one more time - tomorrow. This is a wonderful answer to prayer, as I hated the idea of him having to get pricked for a few weeks!
I was thinking this morning about how "do-able" all of this has been so far. I was thinking about the corvette vs. the junk yard car. I was thinking about how God has blessed Ethan with His protection, and blessed Adam and I with His peace. It's very real. It's very amazing. And I am so, so thankful.
Then I thought about little hiccups or major complications that God could allow to enter into our lives. Would that make His protection any less? Would that change the outcome of the miracle I know we will receive... have received? No. But sometimes things are allowed to happen so that we can see God answer prayer. He receives praise and glory from a bleak situation changed to good. And I accept that, anticipate that, and love that. But, of course, secretly (or not so secretly!) I still hope and pray for amazing miracles every step of the way....
Your prayers for us have been a joy to the Lord, I just know it! Family, friends, strangers, and even children... go before our Heavenly Father and pray for the life of one small baby boy. The tears that thought brings to my eyes.... thank you so much for that. He is hearing you and is blessing every word you say on our behalf. I owe you each so much.
Deuteronomy 10:21 He is your praise, and He is your God, who has done for you these great and awesome things which your eyes have seen.
____________________________________
Additional prayer request: Please be in prayer for Baby Aiden. Their site is listed on my blog. They are from Texas and came up to Boston to see some specialists who might have been able to help find out what has kept their little boy so sick for 8 months. I've been able to meet Aiden's mom (Hannah) and spend time talking with her here in the hospital. It's been great to meet her, however my heart goes out to her and the countless frustrations she's encountered since they've been here. It is a long story, but the bottom line is that they are not any closer to finding the root of Aiden's problem - and the specialist they came to see has just left for a month long vacation. I know God has a plan in all of this for them, but I also know that they could use some encouragement that this trip was not in vain. Please help in praying that Aiden would be healed of his mysterious illness and that this family could live in peace together back at home (Aiden is one of three adorable triplets!).
So here we are. Right in the middle of everything we had been so curious (so nervous) about.
Let's do a mini review...
Back in April, when we first found out about Ethan's illness, I was sad that I'd not be able to stroll him around outside or have fun with him in that way. But I was able to and I did. Many times. I was sad that I wouldn't be able to experience the "firsts" of Ethan eating baby foods or wearing his 'big boy' clothes before we had to come to Boston for transplant. But we did, and have messy pictures to capture the memory!
I was disappointed that I wasn't able to take Ethan for his 3 months portrait, because that's around the time we found out he had cancer. However, when our cutie turned 6 months old, just a couple of weeks before we went left for his transplant, we received the most wonderful surprise of free portraits in a wonderful studio that had been reserved just for us!
Anything I thought might have been taken from my being able to experience various joys as a mother in the early stages of my son's life had either never left to begin with, or were restored to me in more ways that I could have hoped. We've been able to experience anything that a "normal" family would have been able to... though maybe in a different way at times... but we've never been at a loss for memory-making, laughter, or desirable moments.
God is so very good. To the undeserving heart... all the time. Even the things we didn't know we wanted, we've been able to have.
His goodness has continued to be in abundance even through this stage. Ethan has not changed a bit in the ways that we feared he might. He is still very active. Still loves to smile and play. And the most shocking to all the doctors is that he still has a very strong appetite! We had prepared for mouth sores to have taken over his ability or even his desire to eat, and that as a result, he'd be on intravenous fluids by this point. Absolutely not the case! Ethan takes in about the same or even sometimes more formula by mouth than he did when we were at home. The doctors are really very surprised by this. This is such a healthy thing for him if he can keep it up. Some babies forget how to eat/suck on a bottle and their digestive system stops working as a result of the mouth, esophagus and digestive tract sores. This can prolong their ability to be discharged to go home as they have to wean off of the IV fluids and learn to take a bottle again. I am so thankful every day when Ethan reaches for that bottle and downs all of its contents like a pro! This is such a blessing that I didn't even fully realize until we got here and fully understood how great it is that he is still eating on his own. Please join me in praising God for this sweet answer to prayer. I know it's to be understood that this could change in coming weeks, but I know God loves to show His glory through answered prayer. Please continue to be in prayer that sores and ulcers would not be a factor in Ethan's appetite and that he'd take a bottle throughout this whole process. I love seeing the amazement in the doctors and nurses when they see how much he at the previous day... and I'd LOVE to see that continue.
Thank you also for praying for Ethan's line to clear up. According to reports yesterday, the medication level in his one line has cleared up considerably! He will probably only have to have blood taken from his arm/hand one more time - tomorrow. This is a wonderful answer to prayer, as I hated the idea of him having to get pricked for a few weeks!
I was thinking this morning about how "do-able" all of this has been so far. I was thinking about the corvette vs. the junk yard car. I was thinking about how God has blessed Ethan with His protection, and blessed Adam and I with His peace. It's very real. It's very amazing. And I am so, so thankful.
Then I thought about little hiccups or major complications that God could allow to enter into our lives. Would that make His protection any less? Would that change the outcome of the miracle I know we will receive... have received? No. But sometimes things are allowed to happen so that we can see God answer prayer. He receives praise and glory from a bleak situation changed to good. And I accept that, anticipate that, and love that. But, of course, secretly (or not so secretly!) I still hope and pray for amazing miracles every step of the way....
Your prayers for us have been a joy to the Lord, I just know it! Family, friends, strangers, and even children... go before our Heavenly Father and pray for the life of one small baby boy. The tears that thought brings to my eyes.... thank you so much for that. He is hearing you and is blessing every word you say on our behalf. I owe you each so much.
Deuteronomy 10:21 He is your praise, and He is your God, who has done for you these great and awesome things which your eyes have seen.
____________________________________
Additional prayer request: Please be in prayer for Baby Aiden. Their site is listed on my blog. They are from Texas and came up to Boston to see some specialists who might have been able to help find out what has kept their little boy so sick for 8 months. I've been able to meet Aiden's mom (Hannah) and spend time talking with her here in the hospital. It's been great to meet her, however my heart goes out to her and the countless frustrations she's encountered since they've been here. It is a long story, but the bottom line is that they are not any closer to finding the root of Aiden's problem - and the specialist they came to see has just left for a month long vacation. I know God has a plan in all of this for them, but I also know that they could use some encouragement that this trip was not in vain. Please help in praying that Aiden would be healed of his mysterious illness and that this family could live in peace together back at home (Aiden is one of three adorable triplets!).
Monday, August 18, 2008
hands
I happened to look at my hands today. I mean really look at them. Aside from the fact that they are in desperate need of a manicure, my hands - for just a moment - took on a whole new identity to me today.
These hands have been with me from the day I was born. I know what you're thinking..."Hello, Captain Obvious!". But bear with me for a minute.
These hands have been with me for almost 28 years. They helped me hold on tight to the merry-go-round when I was in 1st grade, and scared to death that I was going to fall off. They reached up for help when I fell down and broke my ankle in the 3rd grade. They've helped me write letters to friends in far away places, and they've helped me master my signature to where I finally felt it was "just perfect". My hands have opened books that have changed my life. They've hugged the necks of people that have held extremely special places in my heart. They've shaken the hands of famous authors, and have covered a sneeze on more than one occasion. They've wiped tears from my face and have played with my sister's hair. These hands have guided the cars that I've driven, opened doors, & helped me master the art of only making one trip into the house from the car, no matter how many bags I needed to carry. These hands are how I talk to my mom. My hands know how to move and sign the way they do, because of her. These hands were held by my dad the many times I wanted to run cross the street and the first time he let me sit in his lap to steer the car... only to later be held by my husband on the day of our wedding as we exchanged our vows.
My hands. They've always done important work for me. They've enabled me to fully engage in whatever it was I needed to do. And now? These same hands... my hands... are the hands of a mother. For some reason, that concept caused me to pause for a moment today. I'm a mom. His mom. And my hands take care of him in ways I never knew they'd have to. They don't question what they have to do, they simply do it, because they are the hands of his mother. They don't look like anything special. In fact, at this present moment, they are dry, cracked, and red from all that they have to go through for various parts of Ethan's care. Proof that I care. Yet regardless of their minor cuts and irritated skin.... he knows my hands. He knows their touch. They know how to hold him, how to comfort, & how to touch him. He knows the work that they do for him. I'm his mom.... he knows my hands.
I know His hands as well. The scars they had to endure to prove His love for me run much deeper. His hands know better than any other, how to hold and how to comfort. And the touch of His hands give healing... they give power. I know the work of His hands. He's my Lord; my God...
And I know His hands.
These hands have been with me from the day I was born. I know what you're thinking..."Hello, Captain Obvious!". But bear with me for a minute.
These hands have been with me for almost 28 years. They helped me hold on tight to the merry-go-round when I was in 1st grade, and scared to death that I was going to fall off. They reached up for help when I fell down and broke my ankle in the 3rd grade. They've helped me write letters to friends in far away places, and they've helped me master my signature to where I finally felt it was "just perfect". My hands have opened books that have changed my life. They've hugged the necks of people that have held extremely special places in my heart. They've shaken the hands of famous authors, and have covered a sneeze on more than one occasion. They've wiped tears from my face and have played with my sister's hair. These hands have guided the cars that I've driven, opened doors, & helped me master the art of only making one trip into the house from the car, no matter how many bags I needed to carry. These hands are how I talk to my mom. My hands know how to move and sign the way they do, because of her. These hands were held by my dad the many times I wanted to run cross the street and the first time he let me sit in his lap to steer the car... only to later be held by my husband on the day of our wedding as we exchanged our vows.
My hands. They've always done important work for me. They've enabled me to fully engage in whatever it was I needed to do. And now? These same hands... my hands... are the hands of a mother. For some reason, that concept caused me to pause for a moment today. I'm a mom. His mom. And my hands take care of him in ways I never knew they'd have to. They don't question what they have to do, they simply do it, because they are the hands of his mother. They don't look like anything special. In fact, at this present moment, they are dry, cracked, and red from all that they have to go through for various parts of Ethan's care. Proof that I care. Yet regardless of their minor cuts and irritated skin.... he knows my hands. He knows their touch. They know how to hold him, how to comfort, & how to touch him. He knows the work that they do for him. I'm his mom.... he knows my hands.
I know His hands as well. The scars they had to endure to prove His love for me run much deeper. His hands know better than any other, how to hold and how to comfort. And the touch of His hands give healing... they give power. I know the work of His hands. He's my Lord; my God...
And I know His hands.
Sunday, August 17, 2008
prayer request - *update*
*UPDATE*
It came back that Ethan's central line has been contaminated. His central line has two "tubes" that come out of it. There is one particular medication that can only go through one of the tubes due to it's sticky nature. Keeping the one medication in one of the lines, allowed them to draw a certain blood test from the other line without any contamination from said medication. A mistake was made and the medication was put through the wrong line at some point over the last few days. With the sticky substance now in both lines, one particular blood test cannot be pulled from them. Meaning, Ethan will now have to have blood drawn from his arm a couple of times a week until the line clears. This is an EXTREMELY unpleasant experience for Ethan - as we learned today - because they aren't always able to get blood from the first place they try.... so he has to get pricked several times. We expressed our concern to one of the doctors about such a seemingly careless mistake, as that is the most frustrating part... this could have all been avoided. The obvious feeling is that at this point in the game, there really isn't room for mistakes, and if small ones are made what confidence do we have that bigger ones wouldn't also happen. We voiced this, but at the end of the day, we rest in knowing that God is in control. The new prayer request is that Ethan's line would clear up in the next several days this week, so as to avoid him having to get pricked in the arm more next week.
______________
ORIGINAL REQUEST:
Please be in prayer for Ethan's central line. We were told this afternoon that his line could have become contaminated by one of the medications that he receives daily. If that is the case, then his blood work would not be able to come back accurate through his line.... this could cause a problem as they'd have to prick his arm each day to run this particular blood exam. And from the 10 minute screaming fit Ethan gave this afternoon when they took blood from his arm, this is absolutely not the desirable route. They are running tests this afternoon. Please be in prayer for this situation.
It came back that Ethan's central line has been contaminated. His central line has two "tubes" that come out of it. There is one particular medication that can only go through one of the tubes due to it's sticky nature. Keeping the one medication in one of the lines, allowed them to draw a certain blood test from the other line without any contamination from said medication. A mistake was made and the medication was put through the wrong line at some point over the last few days. With the sticky substance now in both lines, one particular blood test cannot be pulled from them. Meaning, Ethan will now have to have blood drawn from his arm a couple of times a week until the line clears. This is an EXTREMELY unpleasant experience for Ethan - as we learned today - because they aren't always able to get blood from the first place they try.... so he has to get pricked several times. We expressed our concern to one of the doctors about such a seemingly careless mistake, as that is the most frustrating part... this could have all been avoided. The obvious feeling is that at this point in the game, there really isn't room for mistakes, and if small ones are made what confidence do we have that bigger ones wouldn't also happen. We voiced this, but at the end of the day, we rest in knowing that God is in control. The new prayer request is that Ethan's line would clear up in the next several days this week, so as to avoid him having to get pricked in the arm more next week.
______________
ORIGINAL REQUEST:
Please be in prayer for Ethan's central line. We were told this afternoon that his line could have become contaminated by one of the medications that he receives daily. If that is the case, then his blood work would not be able to come back accurate through his line.... this could cause a problem as they'd have to prick his arm each day to run this particular blood exam. And from the 10 minute screaming fit Ethan gave this afternoon when they took blood from his arm, this is absolutely not the desirable route. They are running tests this afternoon. Please be in prayer for this situation.
Friday, August 15, 2008
a bit of "un"- learning
I've been thinking, more and more, about the words of the devotion I shared with you yesterday
. I actually haven't been able to escape the lesson that is so evidently intended for this time of mine and Adam's lives. If God is completely good and perfect in everything that He does, allows, and gives. Then that is always true. It's His nature in the wonderful things that happen to us and it's His same nature in the incomprehensible things that happen to us. And if everything... everything... works together for our good if we love and obey the Lord, then we have to know, fully understand, that the best of times and the worst of times are really the best for our lives at that moment. God's will. I've really been contemplating that since yesterday morning. I mean really thinking about what that means. This is what I've come up with so far...
I'm sure I'm no different than anyone else in most ways. If you see a cuter haircut than you have - you want it - even though there's someone looking at your hair wishing it was hers. You just got a brand new car. Then you're driving down the highway and you pass your same car, but in black... yours is red. You start wishing you had bought the black one. Oddly enough, the person in the black car saw your car and had second thoughts as to whether or not they should have instead purchased the red one.
This concept can be applied to almost every area of our lives if we're not careful.
Your neighbor just went on what appears to you to be a luxurious vacation. The entire time they are away, you're fuming that you either A) can't afford such a luxury, B) can't take time off of work, or C) you just got back from visiting Mount Rushmore and you're upset that you didn't think of making your vacation more "exotic" than educational.
The other side of this coin, is your neighbor.
It turns out that their "luxurious" vacation was actually a nightmare. Not only did it rain most days they were there, but each time they could actually go to the beach, jellyfish and crabs were too much to handle. They spent their time either in their hotel room, or running from store to store to avoid the rain. The icing on the cake is that the souvenirs they purchased were in the suitcase that ended up being "misplaced" by the airport... never to be found again.
They are saying to themselves, WHY DIDN'T WE GO SOMEWHERE LIKE MOUNT RUSHMORE!
This is not a foreign concept to anyone. "The grass is always greener.....". But all this rambling is meant to serve a purpose a bit deeper than the "we always want what we don't have" mindset. I explain these scenarios because they have played out in my own mind, countless times, these last few months. Not necessarily the exact examples, but I've definitely had my share of the "I want their life" temptations.
What does that have to do with God's will? Well, as I mentioned, I was thinking last night and this morning about the words I read in yesterday's Streams in the Desert excerpt.... "We live charmed lives if we are living in the center of God's will.... For God's will is the one hopeful, glad, and glorious thing in the world... and it is working for us all the time...".
All the time? Charmed lives? Really?! Life hasn't really felt so charming or glad or glorious at various times in my life - especially right now. Maybe I wasn't always in line with God's will, but I do believe we are right now. I believe that God's hand and purpose is all over our situation with Ethan. And if I believe that, and I believe God is who He says He is (which I do) then I am right where He wants me. Adam is right where He wants him. Ethan is right where He wants him. If I were in any other place right now - on vacation, on my couch, visiting the biggest mall in America! - anywhere else that I think I'd rather be, would not give me the satisfaction that I think it would. All of those places (and more) are my "greener grass" right now. But if God's will is the most glorious place to be, and I'm currently in the middle of His will, then this is the best place for me... the place I will be the most fulfilled.... as odd and as crazy as that sounds!
I'm still in the process of fully grasping hold of exactly what that means...
He can't help but be completely good because He is God. And He can't help but be completely loving, because He is Love. So it must add up that all He allows His children to endure, is out of love and goodness for their lives. If I were on a beach somewhere right now I doubt it would satisfy me as much as I think it would. I venture to say that even my own bed would not be as comfy as I think it would be. Here I am safe. Not because I'm on the 6th floor of a very protected building, but because I'm where He wants me to be. My grass, though it might need to be landscaped a little bit, is pretty green. And, if I had someone else's, I might accidentally kill it with too much fertilizer or something.
_____________________
James 1:17 - Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.
Romans 8:28 - And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Acts 27:25 - Therefore take heart, men, for I believe God that it will be just as it was told me.
_____________________
Ethan has done well today. He has developed a bit more saliva in his mouth, so he starts to gag and choke on it a little bit... sometimes he throws up as a result, but sometimes he doesn't. This is a sign of mucositis starting to come (mouth, throat and esophagus sores), so please continue to be in prayer for that. His hives are healing and he's not had a recurrence of fever, so this is great (though he is still on the antibiotics). His appetite is still hearty as well. He's had to have several blood and platelet transfusions, but that's very normal. Thank you so much for your prayers for our little cutie! He is certainly being protected by the Lord.
ps - Answered prayer! I have access to the blog from our hospital room, once and for all! Thank you, Boston Childrens for working so hard...
pps - And thank you, Aunt Pam & Uncle Joe for the beautiful photo (above). For some reason, when I saw it, I saw peace...
ppps - Thank you, Kara for the perfect devo you shared on my comments, I truly needed that yesterday!
. I actually haven't been able to escape the lesson that is so evidently intended for this time of mine and Adam's lives. If God is completely good and perfect in everything that He does, allows, and gives. Then that is always true. It's His nature in the wonderful things that happen to us and it's His same nature in the incomprehensible things that happen to us. And if everything... everything... works together for our good if we love and obey the Lord, then we have to know, fully understand, that the best of times and the worst of times are really the best for our lives at that moment. God's will. I've really been contemplating that since yesterday morning. I mean really thinking about what that means. This is what I've come up with so far...I'm sure I'm no different than anyone else in most ways. If you see a cuter haircut than you have - you want it - even though there's someone looking at your hair wishing it was hers. You just got a brand new car. Then you're driving down the highway and you pass your same car, but in black... yours is red. You start wishing you had bought the black one. Oddly enough, the person in the black car saw your car and had second thoughts as to whether or not they should have instead purchased the red one.
This concept can be applied to almost every area of our lives if we're not careful.
Your neighbor just went on what appears to you to be a luxurious vacation. The entire time they are away, you're fuming that you either A) can't afford such a luxury, B) can't take time off of work, or C) you just got back from visiting Mount Rushmore and you're upset that you didn't think of making your vacation more "exotic" than educational.
The other side of this coin, is your neighbor.
It turns out that their "luxurious" vacation was actually a nightmare. Not only did it rain most days they were there, but each time they could actually go to the beach, jellyfish and crabs were too much to handle. They spent their time either in their hotel room, or running from store to store to avoid the rain. The icing on the cake is that the souvenirs they purchased were in the suitcase that ended up being "misplaced" by the airport... never to be found again.
They are saying to themselves, WHY DIDN'T WE GO SOMEWHERE LIKE MOUNT RUSHMORE!
This is not a foreign concept to anyone. "The grass is always greener.....". But all this rambling is meant to serve a purpose a bit deeper than the "we always want what we don't have" mindset. I explain these scenarios because they have played out in my own mind, countless times, these last few months. Not necessarily the exact examples, but I've definitely had my share of the "I want their life" temptations.
What does that have to do with God's will? Well, as I mentioned, I was thinking last night and this morning about the words I read in yesterday's Streams in the Desert excerpt.... "We live charmed lives if we are living in the center of God's will.... For God's will is the one hopeful, glad, and glorious thing in the world... and it is working for us all the time...".
All the time? Charmed lives? Really?! Life hasn't really felt so charming or glad or glorious at various times in my life - especially right now. Maybe I wasn't always in line with God's will, but I do believe we are right now. I believe that God's hand and purpose is all over our situation with Ethan. And if I believe that, and I believe God is who He says He is (which I do) then I am right where He wants me. Adam is right where He wants him. Ethan is right where He wants him. If I were in any other place right now - on vacation, on my couch, visiting the biggest mall in America! - anywhere else that I think I'd rather be, would not give me the satisfaction that I think it would. All of those places (and more) are my "greener grass" right now. But if God's will is the most glorious place to be, and I'm currently in the middle of His will, then this is the best place for me... the place I will be the most fulfilled.... as odd and as crazy as that sounds!
I'm still in the process of fully grasping hold of exactly what that means...
He can't help but be completely good because He is God. And He can't help but be completely loving, because He is Love. So it must add up that all He allows His children to endure, is out of love and goodness for their lives. If I were on a beach somewhere right now I doubt it would satisfy me as much as I think it would. I venture to say that even my own bed would not be as comfy as I think it would be. Here I am safe. Not because I'm on the 6th floor of a very protected building, but because I'm where He wants me to be. My grass, though it might need to be landscaped a little bit, is pretty green. And, if I had someone else's, I might accidentally kill it with too much fertilizer or something.
_____________________
James 1:17 - Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.
Romans 8:28 - And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Acts 27:25 - Therefore take heart, men, for I believe God that it will be just as it was told me.
_____________________
Ethan has done well today. He has developed a bit more saliva in his mouth, so he starts to gag and choke on it a little bit... sometimes he throws up as a result, but sometimes he doesn't. This is a sign of mucositis starting to come (mouth, throat and esophagus sores), so please continue to be in prayer for that. His hives are healing and he's not had a recurrence of fever, so this is great (though he is still on the antibiotics). His appetite is still hearty as well. He's had to have several blood and platelet transfusions, but that's very normal. Thank you so much for your prayers for our little cutie! He is certainly being protected by the Lord.
ps - Answered prayer! I have access to the blog from our hospital room, once and for all! Thank you, Boston Childrens for working so hard...
pps - And thank you, Aunt Pam & Uncle Joe for the beautiful photo (above). For some reason, when I saw it, I saw peace...
ppps - Thank you, Kara for the perfect devo you shared on my comments, I truly needed that yesterday!
Thursday, August 14, 2008
momma slept!
Thank you all for praying for my being able to rest. I think last night I got about 10 hours of (much needed!) sleep, altogether. Ethan fell asleep around 6:30 in the evening, so I decided to take a nap as well. He didn't wake up until 10:30pm, which was wonderful, because I had slept the entire time as well. He fell back to sleep soon after, and we both slept again until 4:00 ish this morning. Truly a blessing. Sleep... it does a body (mind, soul, spirit) good! Thank you, Lord for the answered prayer of rest....
I am continually amazed at how well Ethan has been doing. The hives are starting to heal, so he has these dark red "bruises" all over his face, but they can't cover up that adorable smile or his sparkling blue eyes! And he doesn't seem to be bothered by them much today. Other than that, he is still VERY MUCH himself. It is truly amazing.... and I don't say that in a non-chalant kind of way, either. It is amazing. He's still rolling over both ways, playing with his toys, smiling and babbling.... AND.... he still has quite the appetite (though he does throw up about once a day). That part has been very shocking to the docs and nurses (the eating, not the vomiting)! We thought for sure that he'd have lost his appetite by now with sores or something developing, and that he'd have to be fed intravenously, but nope! This little boy is eating like crazy! I am so very happy about that. I know it would be normal for him to have to start being fed via an injection of protein, calories and electrolytes, but I just LOVE that we haven't had to go that direction yet. He's getting much more calories than anyone here thought he would, by his formula alone. No additional "help" needed. What a sweet blessing, thank you again, Lord...
I wanted to tell you all how much your comments, emails and cards have meant to me. I greatly appreciate the encouragement, even if I'm not able to let you know directly.
I was reading in my devotion this morning and there was so much of it that I wanted to share with you, then I realized I was basically wanting to share the whole thing... so I decided that I would....
"Thou couldst have no other power at all against me, except it were given thee from above." (John 19:11)
"Nothing that is not God's will can come into the life of one who trusts and obeys God. This fact is enough to make our life one of ceaseless thanksgiving and joy. For 'God's will is the one hopeful, glad and glorious thing in the world'; and it is working in the omnipotence for us all the time, with nothing to prevent it if we are surrendered and believing. One who was passing through deep waters of affliction wrote to a friend, 'Is it not a glorious thing to know that, [it makes] no difference how unjust a thing may be, or how absolutely it may seem to be from satan, by the time it reaches us it is God's will for us, and will work for good to us? For all things work together for good to us who love God. And even of the betrayal, Christ said, 'The cup which my Father gave me, shall I not drink it?' We live charmed lives if we are living in the center of God's will. All the attacks that satan, through others' sin, can hurl against us are not only powerless to harm us, but are turned into blessings on the way." -- H.W.S, August 14 excerpt from Streams in the Desert, Cowman.
There is so much I could say about these words, but I will let it stand alone.
Lord, please give me this joy and perspective in abundance...
I am continually amazed at how well Ethan has been doing. The hives are starting to heal, so he has these dark red "bruises" all over his face, but they can't cover up that adorable smile or his sparkling blue eyes! And he doesn't seem to be bothered by them much today. Other than that, he is still VERY MUCH himself. It is truly amazing.... and I don't say that in a non-chalant kind of way, either. It is amazing. He's still rolling over both ways, playing with his toys, smiling and babbling.... AND.... he still has quite the appetite (though he does throw up about once a day). That part has been very shocking to the docs and nurses (the eating, not the vomiting)! We thought for sure that he'd have lost his appetite by now with sores or something developing, and that he'd have to be fed intravenously, but nope! This little boy is eating like crazy! I am so very happy about that. I know it would be normal for him to have to start being fed via an injection of protein, calories and electrolytes, but I just LOVE that we haven't had to go that direction yet. He's getting much more calories than anyone here thought he would, by his formula alone. No additional "help" needed. What a sweet blessing, thank you again, Lord...
I wanted to tell you all how much your comments, emails and cards have meant to me. I greatly appreciate the encouragement, even if I'm not able to let you know directly.
I was reading in my devotion this morning and there was so much of it that I wanted to share with you, then I realized I was basically wanting to share the whole thing... so I decided that I would....
"Thou couldst have no other power at all against me, except it were given thee from above." (John 19:11)
"Nothing that is not God's will can come into the life of one who trusts and obeys God. This fact is enough to make our life one of ceaseless thanksgiving and joy. For 'God's will is the one hopeful, glad and glorious thing in the world'; and it is working in the omnipotence for us all the time, with nothing to prevent it if we are surrendered and believing. One who was passing through deep waters of affliction wrote to a friend, 'Is it not a glorious thing to know that, [it makes] no difference how unjust a thing may be, or how absolutely it may seem to be from satan, by the time it reaches us it is God's will for us, and will work for good to us? For all things work together for good to us who love God. And even of the betrayal, Christ said, 'The cup which my Father gave me, shall I not drink it?' We live charmed lives if we are living in the center of God's will. All the attacks that satan, through others' sin, can hurl against us are not only powerless to harm us, but are turned into blessings on the way." -- H.W.S, August 14 excerpt from Streams in the Desert, Cowman.
There is so much I could say about these words, but I will let it stand alone.
Lord, please give me this joy and perspective in abundance...
Wednesday, August 13, 2008
Day +1 after transplant
Thank you for praying... Ethan did receive his cord blood transplant yesterday afternoon at 3:00. It was somewhat anti-climatic, but we made a memory of it anyway! I had the video camera out as the nurse hooked up the new donor blood cells to Ethan's IV line and as I was talking to Ethan on camera.... he fell asleep. But that's okay, Adam and I were fully in the moment even if our little guy was tired.
The transfusion itself was quite simple. It only took about an hour for all the new cells to be completely delivered into his little body. However, the night before (Monday night) Ethan did start to develop hives... a slightly delayed reaction to the ATGAM (horse hormone) that he had received the past 3 days. The hives started out small, but they soon took over his whole face and head. He has a few on his chest and abdomen as well. It's VERY sad to look at him covered in red splotches, but we've been assured it looks worse than it is. He's getting benadryl around the clock to help with the itching.
Last night, Ethan was not feeling very well. I couldn't get him to fall asleep, and around midnight he got chills, and shortly thereafter, a fever. Due to the fever, he will now be on heavy antibiotics to protect him against any type of infections. I don't like this, however I know it's necessary. I say that because, these are the antibiotics that have been known to cause hearing loss and kidney failure with excessive and prolonged use. Yes, I'm trusting the Lord with those "issues", but as a mom... well, I just don't like the idea of such possibilities.
He's been okay today, but it's obvious he is not feeling well. I'm sure the 18 medications he is on every day (yes, I said 18, and that is NOT an exaggeration.... and some of those he takes several times a day!) have taken a toll on his energy level. I know all of this has taken a toll on me. I've not been able to sleep much at all during the night. Last night it was due to Ethan not feeling well, but the past nights it's been hard to sleep with the nursing staff coming in and the beeping monitors that are hooked up to Ethan. Needless to say, I've still been a bit of a grump. I begged God for rest last night.... but it didn't come. I'm trying to not let it phase me, and I know enough to know that God is there even when we do not "feel" His presence... but, I'll be honest... I'd sure like to "feel" Him today. Not because Ethan is doing poorly, because all in all, he is doing well. But more because I am doing somewhat poorly and just need a touch from the Holy Spirit. A mini revival in my own heart.
I will leave you with a few more pictures. The packet of blood that you see is the actual transplant that Ethan got yesterday! Those are the precious new donor cells that are now swimming around in Ethan's body. Pray that they engraft quickly into his system! The red-faced child you see in the pictures would be our little cutie, covered in hives yesterday (unfortunately, it's much worse today). The first picture is the sign the staff put on Ethan's door to mark the occasion.
Oh yeah, I'm still having to come to Starbucks...at least I have found a new drink that I like!
The transfusion itself was quite simple. It only took about an hour for all the new cells to be completely delivered into his little body. However, the night before (Monday night) Ethan did start to develop hives... a slightly delayed reaction to the ATGAM (horse hormone) that he had received the past 3 days. The hives started out small, but they soon took over his whole face and head. He has a few on his chest and abdomen as well. It's VERY sad to look at him covered in red splotches, but we've been assured it looks worse than it is. He's getting benadryl around the clock to help with the itching.
Last night, Ethan was not feeling very well. I couldn't get him to fall asleep, and around midnight he got chills, and shortly thereafter, a fever. Due to the fever, he will now be on heavy antibiotics to protect him against any type of infections. I don't like this, however I know it's necessary. I say that because, these are the antibiotics that have been known to cause hearing loss and kidney failure with excessive and prolonged use. Yes, I'm trusting the Lord with those "issues", but as a mom... well, I just don't like the idea of such possibilities.
He's been okay today, but it's obvious he is not feeling well. I'm sure the 18 medications he is on every day (yes, I said 18, and that is NOT an exaggeration.... and some of those he takes several times a day!) have taken a toll on his energy level. I know all of this has taken a toll on me. I've not been able to sleep much at all during the night. Last night it was due to Ethan not feeling well, but the past nights it's been hard to sleep with the nursing staff coming in and the beeping monitors that are hooked up to Ethan. Needless to say, I've still been a bit of a grump. I begged God for rest last night.... but it didn't come. I'm trying to not let it phase me, and I know enough to know that God is there even when we do not "feel" His presence... but, I'll be honest... I'd sure like to "feel" Him today. Not because Ethan is doing poorly, because all in all, he is doing well. But more because I am doing somewhat poorly and just need a touch from the Holy Spirit. A mini revival in my own heart.
I will leave you with a few more pictures. The packet of blood that you see is the actual transplant that Ethan got yesterday! Those are the precious new donor cells that are now swimming around in Ethan's body. Pray that they engraft quickly into his system! The red-faced child you see in the pictures would be our little cutie, covered in hives yesterday (unfortunately, it's much worse today). The first picture is the sign the staff put on Ethan's door to mark the occasion.
Oh yeah, I'm still having to come to Starbucks...at least I have found a new drink that I like!
Tuesday, August 12, 2008
happy transplant day, ethan!
Today is a day to celebrate! Well, it will probably be more of an actual "celebration" on this day next year... but this day, August 12, 2008 is the day we've been waiting for since April 9 of this year. And the day that will always be cherished in years to come as we look back and reflect on all that God has and will continue do with Ethan's life.
Ethan should be getting his transplant today at 3:00pm (eastern time). The weeks to come will tell us that what we've hoped for has come true. He did end up getting hives overnight, and his skin looks pretty irritated (especially around his face and eyes), but still no fever and no other complications! I also want to mention that his spleen has certainly shrunk in size! The radiation did it's job and that organ needed to get smaller, so Thank you, God! Because it did! Pray specifically for the potential sores/ulcers (called mucositis) that could surface in his mouth, throat, esophagus, digestive tract and his rectal area. They can bleed and also become very painful for Ethan and usually go away about 2 weeks after the transplant. Thank you in advance for your prayers...
I'm not sure what I expected to feel like when "today" finally arrived. I don't know if it's the lack of sleep or a type of acceptance that has settled into my being, but I don't really have a strong emotion one way or another. Just kind of steady.... and I think I prefer that anyway. I think somewhere along this journey, as we got closer to where we are now, I was anticipating some spiritual awakening... a sort of extreme closeness to the Lord that I've never experienced before... But really, I'm the same. And I'm not sure what to think about that. My trust in the promise He's given me about Ethan's healing has never waivered, but I wanted so badly to be completely available to the Lord's work while we had to endure this part of the process... to have a dramatic and powerful change in my relationship with God, and unfortunately, I've just not been able to get out of my own way. My mood, behavior, attitude, outlook... it's all just mediocre. I'm not living each day as if I know the Giver of Life. I'm not tapping into the joy that I know is available to me if I would just reach up and grab it. If you saw me in the elevator going down to grab lunch, you'd probably never even know that I had the hope of Jesus Christ in me.... and that makes me sad. I don't want to waste any aspect of the trial we are having to endure. And I'm upset with myself for not fully grasping all that God is trying to teach and show me.... instead, I resist it. Pray that these weeks are not in vain. Pray that God's purpose is not at all delayed because of my lack of willingness to participate. Pray that our son continues brings Him all the glory He deserves. That we see miracle after miracle and He receives glory upon glory. Pray that the Lord would unlock the chains around my heart that have left me content to just "get by"...
Ethan, your daddy and I are so very proud of you! You're our little 'super boy'! We want you to always know that we love you, and that Jesus loves you so very much. He's certainly got you in the palms of His hands and He's going to do wonderful and mighty things in and through you...
Ethan should be getting his transplant today at 3:00pm (eastern time). The weeks to come will tell us that what we've hoped for has come true. He did end up getting hives overnight, and his skin looks pretty irritated (especially around his face and eyes), but still no fever and no other complications! I also want to mention that his spleen has certainly shrunk in size! The radiation did it's job and that organ needed to get smaller, so Thank you, God! Because it did! Pray specifically for the potential sores/ulcers (called mucositis) that could surface in his mouth, throat, esophagus, digestive tract and his rectal area. They can bleed and also become very painful for Ethan and usually go away about 2 weeks after the transplant. Thank you in advance for your prayers...
I'm not sure what I expected to feel like when "today" finally arrived. I don't know if it's the lack of sleep or a type of acceptance that has settled into my being, but I don't really have a strong emotion one way or another. Just kind of steady.... and I think I prefer that anyway. I think somewhere along this journey, as we got closer to where we are now, I was anticipating some spiritual awakening... a sort of extreme closeness to the Lord that I've never experienced before... But really, I'm the same. And I'm not sure what to think about that. My trust in the promise He's given me about Ethan's healing has never waivered, but I wanted so badly to be completely available to the Lord's work while we had to endure this part of the process... to have a dramatic and powerful change in my relationship with God, and unfortunately, I've just not been able to get out of my own way. My mood, behavior, attitude, outlook... it's all just mediocre. I'm not living each day as if I know the Giver of Life. I'm not tapping into the joy that I know is available to me if I would just reach up and grab it. If you saw me in the elevator going down to grab lunch, you'd probably never even know that I had the hope of Jesus Christ in me.... and that makes me sad. I don't want to waste any aspect of the trial we are having to endure. And I'm upset with myself for not fully grasping all that God is trying to teach and show me.... instead, I resist it. Pray that these weeks are not in vain. Pray that God's purpose is not at all delayed because of my lack of willingness to participate. Pray that our son continues brings Him all the glory He deserves. That we see miracle after miracle and He receives glory upon glory. Pray that the Lord would unlock the chains around my heart that have left me content to just "get by"...
Ethan, your daddy and I are so very proud of you! You're our little 'super boy'! We want you to always know that we love you, and that Jesus loves you so very much. He's certainly got you in the palms of His hands and He's going to do wonderful and mighty things in and through you...
Monday, August 11, 2008
lots to say!
Wow. I should really just leave this post with only that word. Wow. Yep, that would sum it all up…. So I’ll let you go now. See ya!
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
__________________________________
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!
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!
Friday, August 8, 2008
Update on sweet Ethan
Hi all, I'm having sweet Hollie copy and paste this message for you again. For some reason my ability to login to the blog to update it was blocked again as of the other day... and it's looking like it won't be fixed until Monday or so. I wanted to fill you in on things, though so here we go!
Ethan finished his final sessions of radiation today. And he did a fabulous job! He doesn't seem phased by any of this so far. Really, he's only been a little more tired than ususal, but he still has his cutie pie smile and is still active and responsive. You should have seen his face light up when daddy came today! It was wonderful to see Adam again and for the 3 of us to be together. Adam will be with us through Tuesday... when Ethan gets his transplant.
We got moved to a new room today and I feel much better about it. Everyone has been very nice and are very good about Ethan's care. I'm starting to feel more comfortable. I can't tell you how wonderful Ethan has been doing. Even after a week of radiation, you'd STILL never know he had cancer and was about to go through a transplant! I have a few cute pictures to post of him, that I took today... but I'll have to wait until I get access to the blog again! They are so adorable!!
Overnight tonight, which will be 1:00 AM on Saturday morning, Ethan will begin his steroid medication his ATG medication and his chemo. They've warned us that these medications make children feel extremely "yucky" and moody. We should expect fevers, chills, hives, possible blood in urine, and extreme irritability.... however, I'm unashamedly asking for prayer against each of those possible side effects. I do accept whatever the Lord's plan, but I don't belive it hurts to ask Him for His favor and blessing AND protection to be over Ethan's body. So far it has, and I'm asking you to pray that it continues... especially Saturday, Sunday, and Monday (that's how long he will be getting this particular regimen). I simply do not want him to suffer, and my prayer throughout this process is that I would be the one to struggle, not our little baby. And God has been so good. So very, very good.
Each morning I sing to Ethan, and I'll close tonight's post with the song....
He's got the whole world in His hands
He's got the whole world in His hands
He's got the whole world in His hands
He's got the whole world in His hands
He's got Ethan Ecker Krawiec in His hands
He's got Ethan Ecker Krawiec in His hands
He's got Ethan Ecker Krawiec in His hands
He's got the whole world in His hands
He's got your mommy and your daddy in His hands
He's got your mommy and your daddy in His hands
He's got your mommy and your daddy in His hands
He's got the whole world in His hands
He's got our little baby boy in His hands
He's got our little baby boy in His hands
He's got our little baby boy in His hands
He's got the whole world in His hands
.... and He's got YOU too!
Ethan finished his final sessions of radiation today. And he did a fabulous job! He doesn't seem phased by any of this so far. Really, he's only been a little more tired than ususal, but he still has his cutie pie smile and is still active and responsive. You should have seen his face light up when daddy came today! It was wonderful to see Adam again and for the 3 of us to be together. Adam will be with us through Tuesday... when Ethan gets his transplant.
We got moved to a new room today and I feel much better about it. Everyone has been very nice and are very good about Ethan's care. I'm starting to feel more comfortable. I can't tell you how wonderful Ethan has been doing. Even after a week of radiation, you'd STILL never know he had cancer and was about to go through a transplant! I have a few cute pictures to post of him, that I took today... but I'll have to wait until I get access to the blog again! They are so adorable!!
Overnight tonight, which will be 1:00 AM on Saturday morning, Ethan will begin his steroid medication his ATG medication and his chemo. They've warned us that these medications make children feel extremely "yucky" and moody. We should expect fevers, chills, hives, possible blood in urine, and extreme irritability.... however, I'm unashamedly asking for prayer against each of those possible side effects. I do accept whatever the Lord's plan, but I don't belive it hurts to ask Him for His favor and blessing AND protection to be over Ethan's body. So far it has, and I'm asking you to pray that it continues... especially Saturday, Sunday, and Monday (that's how long he will be getting this particular regimen). I simply do not want him to suffer, and my prayer throughout this process is that I would be the one to struggle, not our little baby. And God has been so good. So very, very good.
Each morning I sing to Ethan, and I'll close tonight's post with the song....
He's got the whole world in His hands
He's got the whole world in His hands
He's got the whole world in His hands
He's got the whole world in His hands
He's got Ethan Ecker Krawiec in His hands
He's got Ethan Ecker Krawiec in His hands
He's got Ethan Ecker Krawiec in His hands
He's got the whole world in His hands
He's got your mommy and your daddy in His hands
He's got your mommy and your daddy in His hands
He's got your mommy and your daddy in His hands
He's got the whole world in His hands
He's got our little baby boy in His hands
He's got our little baby boy in His hands
He's got our little baby boy in His hands
He's got the whole world in His hands
.... and He's got YOU too!
Thursday, August 7, 2008
Hmmm....
Hi everyone, I can't login to Ethan's site (again). I've asked Hollie to post this message for me (thank you, Hollie). I can view his webpage, but all of a sudden I can't login to actually update it. I'm not sure what happened. Hopefully I can re-connect with someone tomorrow.
Today was a really good day for Ethan. Thank you so much for praying. His demeanor was actually even better today than it was yesterday... and I didn't consider yesterday a bad day. He was very active this afternoon and had a healthy appetite. I am so thankful for your prayers as the Lord indeed has protected Ethan these past few days. Tomorrow is his last day of radiation. So far, the only side effects that are visible is his skin. He just looks a little sun-kissed and his lips are pretty chapped/dry. That radiation bed is like a tanning bed.... and he's got more of a tan than I do! Vaseline is helping his lips, but he wipes it right off with all the toys and such he puts in his mouth. Pray that his skin doesn't get further irritated in the days ahead as it could start to peel and become uncomfortable for him. Although right now, it really just looks like he's been in the sun a little.... not bad at all. I can't properly describe how great his attitude was today. He was so happy and content and the amount of formula he took this afternoon and evening was wonderful! Be in prayer for this weekend. He starts taking heavy doses of steroids along with his chemo, and they say that the steriods can make babies quite irritable (and that's putting it nicely), sometimes the steroids make children sleepy.... so I'm praying for the sleepy and not the miserable. Also, right now, Ethan has not shown any signs of the mouth sores, it's still a little early, but I'm praying if/when they arrive, that they aren't too painful for him.
He did take his medicine better today, although it is quite a chore trying to give it to him. Continue to be in prayer for that. I was very encouraged with the way things went today. Thank you, Lord.... And thank YOU for praying.... your prayers certainly make a difference.
On a side note, on the side of my blog, you see two links of babies I've asked you to pray for. I've never met either of the families, but just heard about their situation through other sites or people. Anyway, baby Aiden and his mom are here in Boston (from Texas) hoping the specialists here can help find the cause of Aiden's ongoing illness. His mom and I will be meeting for the 1st time tomorrow (she's on the 9th floor and we are on the 6th) and I'm looking forward to meeting this woman who's son I've been praying for - face to face! How special that the Lord would bring our paths together! Please be in prayer that their time here in Boston will be well spent. Her baby boy has been sick for most of his 9 months of life without knowing the root cause. Pray they can help her here! Pray for her as well, Hannah is her name, she is away from her two other sons and her husband during this time (they are in Texas!).
Thank you so much for your emails and comments. I read them all... and cherish every single word.
Today was a really good day for Ethan. Thank you so much for praying. His demeanor was actually even better today than it was yesterday... and I didn't consider yesterday a bad day. He was very active this afternoon and had a healthy appetite. I am so thankful for your prayers as the Lord indeed has protected Ethan these past few days. Tomorrow is his last day of radiation. So far, the only side effects that are visible is his skin. He just looks a little sun-kissed and his lips are pretty chapped/dry. That radiation bed is like a tanning bed.... and he's got more of a tan than I do! Vaseline is helping his lips, but he wipes it right off with all the toys and such he puts in his mouth. Pray that his skin doesn't get further irritated in the days ahead as it could start to peel and become uncomfortable for him. Although right now, it really just looks like he's been in the sun a little.... not bad at all. I can't properly describe how great his attitude was today. He was so happy and content and the amount of formula he took this afternoon and evening was wonderful! Be in prayer for this weekend. He starts taking heavy doses of steroids along with his chemo, and they say that the steriods can make babies quite irritable (and that's putting it nicely), sometimes the steroids make children sleepy.... so I'm praying for the sleepy and not the miserable. Also, right now, Ethan has not shown any signs of the mouth sores, it's still a little early, but I'm praying if/when they arrive, that they aren't too painful for him.
He did take his medicine better today, although it is quite a chore trying to give it to him. Continue to be in prayer for that. I was very encouraged with the way things went today. Thank you, Lord.... And thank YOU for praying.... your prayers certainly make a difference.
On a side note, on the side of my blog, you see two links of babies I've asked you to pray for. I've never met either of the families, but just heard about their situation through other sites or people. Anyway, baby Aiden and his mom are here in Boston (from Texas) hoping the specialists here can help find the cause of Aiden's ongoing illness. His mom and I will be meeting for the 1st time tomorrow (she's on the 9th floor and we are on the 6th) and I'm looking forward to meeting this woman who's son I've been praying for - face to face! How special that the Lord would bring our paths together! Please be in prayer that their time here in Boston will be well spent. Her baby boy has been sick for most of his 9 months of life without knowing the root cause. Pray they can help her here! Pray for her as well, Hannah is her name, she is away from her two other sons and her husband during this time (they are in Texas!).
Thank you so much for your emails and comments. I read them all... and cherish every single word.
Wednesday, August 6, 2008
I'm back!
Wow... it feels like forever since I've actually been on Ethan's site to update things. I guess it's been since Saturday, huh? Well, I'll do my best to get caught up... (thank you, Hollie for posting a few updates for me yesterday and the day before!)
Well, Monday started out really great. Adam and I had a very nice morning as we got everything ready and all my bags loaded in the car. As we were getting ready to leave, I looked at our living room... we cleared out all of Ethan's toys and blankets that morning, and man, our living room floor hasn't looked that clutter-free in months!
I felt really calm and confident as we were making the 2 1/2 hour drive to Boston. It was strange to leave our house and realize that I wouldn't be back for a couple of months, but I was relatively relaxed about it. I had our video camera out while we left and was just taking it all in. I filmed some of our ride, and made a play-by-play all along the way. Adam was doing his best to humor me. Everything was fine until we actually got admitted into our room. I think it all hit me at that moment. After one of the nurses guided us in, I just started to cry and from that moment on, I just shut down. Whatever "armor" I had thought was in place within my mental, physical and spiritual self, completely fell off... and I've struggled to get back to that point ever since. I've not fully adjusted to our new "home". The days are busy... especially now with Ethan getting two rounds of radiation each day. There is so much detail involved in every single step of, well, everything. You'd get dizzy just reading all the mild-to-severe frustrations I've encountered, but I'm hoping that will subside as I get more used to the people here and the routine of things. Everyone is nice and there are some wonderful resources available to us, which have been a very nice blessing, but it's just a hard situation and right now everything is new... too "new" (I miss everything about MS8 and 2J! You all are fantastic!).
I was talking to someone today who had asked me how I was feeling about all of this, and I simply said that I can't really focus on how I feel about it.... because there's nothing I can do to change having to go through it. No, I don't want to be here doing this. I don't want to have to live away from home for 6 to 8 weeks. I don't want Ethan to be sick or experience any problems over this next year. I don't want to go through all the tiresome details that his treatment will involve.... but I don't have a choice. Adam and I don't have an option to see what's behind door #2. This is it. If you don't like regular soda, you go back and get diet. If you don't like the shirt you bought, you can exchange it. If you find yourself in a job that you hate, you look for another one. If you have red hair and you want brown hair, no problem. There are a lot of things in our daily lives that we can change if we're not happy with it. You can even get mapquest to give you directions on how to get from point A to point B by avoiding all highways, if you like. But, unfortunately, that is not the case with an illness like this. There is no detour. You can't take the path around the mountain, to avoid the dangerous terrain. You must walk up it. And once you walk up, there's no going back down, until you get to the other side... So I can't really spend energy focusing on how I "feel" about this situation.... simply stated, because how I feel doesn't change what I have to do. I'm his mom. And right now, I am in the middle of the most important "job" of my life... I feel tired sometimes, I feel relieved sometimes and I feel overwhelmed sometimes and I feel perfectly normal sometimes. But this mountain ain't goin' anywhere until the Lord moves it. So until that time, we're walking up it. Not always enjoying the hike, but praying that there's fulfillment... good... life... on the other side.
Please be in prayer that I continue to have moments of rest each night and that I'm able to have some energy and availability during the days to reflect on God's Word and spend time in prayer with the Lord. I am so thankful that you are fighting for us in prayer. I haven't been able to find the words to finish the prayers that I start... thank you for finishing them for me.
Other specific prayer needs this week:
1. There are 3 medications that Ethan has to take by mouth (they do not come in an IV form) each day. So far, he throws most of them up. Please pray that he can take these medications as they help protect his liver. More importantly pray God's protection of his liver regardless of the medication getting into his system.
2. He has 2 more days of radiation. So far, he's done very well with the anesthesia. Please pray that the next 4 treatments (2 per day) go as well as they have. Pray also that he'd sleep later in the mornings so as to not have to suffer for the 2 hours he's been having to go without formula (he wakes up at 5:00 and his treatment isn't until 7:30, so that's not a fun couple of hours for him... or me... the afternoons are much better in this area).
3. Pray that he will not be in any pain as he finishes up his radiation treatments as some side effects are delayed.
4. He begins chemo and steroids and other medications on Saturday as we gear up for his transplant on Tuesday. Pray that all cancer cells are removed from his body with each of the new phases of treatment. Each medication has the potential or "expectation" to cause pain and severe discomfort to Ethan. Please pray God's protection over Ethan's body and that only good would come of each thing that enters his body and not harm him. That alone would be a miracle and a wonder to us and the doctors.
Aside from having a mommy who has debated just living in denial, and packing him up to go back home, Ethan is doing great! He is still very much himself. And still relatively active. I am so VERY thankful that he's not been impacted by pain or complication so far.... and my prayer, from the deepest part of my soul, is that that continues for him. I can deal with my own issues, but he is my first priority... and I'd rather have the burden of a thousand "bad days" than him have even one.
Ok... I'm off to chat with my hubby now before turning in.... it's hard to be away from him, but thank the Lord for cell phones and unlimited calling!
Well, Monday started out really great. Adam and I had a very nice morning as we got everything ready and all my bags loaded in the car. As we were getting ready to leave, I looked at our living room... we cleared out all of Ethan's toys and blankets that morning, and man, our living room floor hasn't looked that clutter-free in months!
I felt really calm and confident as we were making the 2 1/2 hour drive to Boston. It was strange to leave our house and realize that I wouldn't be back for a couple of months, but I was relatively relaxed about it. I had our video camera out while we left and was just taking it all in. I filmed some of our ride, and made a play-by-play all along the way. Adam was doing his best to humor me. Everything was fine until we actually got admitted into our room. I think it all hit me at that moment. After one of the nurses guided us in, I just started to cry and from that moment on, I just shut down. Whatever "armor" I had thought was in place within my mental, physical and spiritual self, completely fell off... and I've struggled to get back to that point ever since. I've not fully adjusted to our new "home". The days are busy... especially now with Ethan getting two rounds of radiation each day. There is so much detail involved in every single step of, well, everything. You'd get dizzy just reading all the mild-to-severe frustrations I've encountered, but I'm hoping that will subside as I get more used to the people here and the routine of things. Everyone is nice and there are some wonderful resources available to us, which have been a very nice blessing, but it's just a hard situation and right now everything is new... too "new" (I miss everything about MS8 and 2J! You all are fantastic!).
I was talking to someone today who had asked me how I was feeling about all of this, and I simply said that I can't really focus on how I feel about it.... because there's nothing I can do to change having to go through it. No, I don't want to be here doing this. I don't want to have to live away from home for 6 to 8 weeks. I don't want Ethan to be sick or experience any problems over this next year. I don't want to go through all the tiresome details that his treatment will involve.... but I don't have a choice. Adam and I don't have an option to see what's behind door #2. This is it. If you don't like regular soda, you go back and get diet. If you don't like the shirt you bought, you can exchange it. If you find yourself in a job that you hate, you look for another one. If you have red hair and you want brown hair, no problem. There are a lot of things in our daily lives that we can change if we're not happy with it. You can even get mapquest to give you directions on how to get from point A to point B by avoiding all highways, if you like. But, unfortunately, that is not the case with an illness like this. There is no detour. You can't take the path around the mountain, to avoid the dangerous terrain. You must walk up it. And once you walk up, there's no going back down, until you get to the other side... So I can't really spend energy focusing on how I "feel" about this situation.... simply stated, because how I feel doesn't change what I have to do. I'm his mom. And right now, I am in the middle of the most important "job" of my life... I feel tired sometimes, I feel relieved sometimes and I feel overwhelmed sometimes and I feel perfectly normal sometimes. But this mountain ain't goin' anywhere until the Lord moves it. So until that time, we're walking up it. Not always enjoying the hike, but praying that there's fulfillment... good... life... on the other side.
Please be in prayer that I continue to have moments of rest each night and that I'm able to have some energy and availability during the days to reflect on God's Word and spend time in prayer with the Lord. I am so thankful that you are fighting for us in prayer. I haven't been able to find the words to finish the prayers that I start... thank you for finishing them for me.
Other specific prayer needs this week:
1. There are 3 medications that Ethan has to take by mouth (they do not come in an IV form) each day. So far, he throws most of them up. Please pray that he can take these medications as they help protect his liver. More importantly pray God's protection of his liver regardless of the medication getting into his system.
2. He has 2 more days of radiation. So far, he's done very well with the anesthesia. Please pray that the next 4 treatments (2 per day) go as well as they have. Pray also that he'd sleep later in the mornings so as to not have to suffer for the 2 hours he's been having to go without formula (he wakes up at 5:00 and his treatment isn't until 7:30, so that's not a fun couple of hours for him... or me... the afternoons are much better in this area).
3. Pray that he will not be in any pain as he finishes up his radiation treatments as some side effects are delayed.
4. He begins chemo and steroids and other medications on Saturday as we gear up for his transplant on Tuesday. Pray that all cancer cells are removed from his body with each of the new phases of treatment. Each medication has the potential or "expectation" to cause pain and severe discomfort to Ethan. Please pray God's protection over Ethan's body and that only good would come of each thing that enters his body and not harm him. That alone would be a miracle and a wonder to us and the doctors.
Aside from having a mommy who has debated just living in denial, and packing him up to go back home, Ethan is doing great! He is still very much himself. And still relatively active. I am so VERY thankful that he's not been impacted by pain or complication so far.... and my prayer, from the deepest part of my soul, is that that continues for him. I can deal with my own issues, but he is my first priority... and I'd rather have the burden of a thousand "bad days" than him have even one.
Ok... I'm off to chat with my hubby now before turning in.... it's hard to be away from him, but thank the Lord for cell phones and unlimited calling!
another update
Hello all, this is Hollie again I am copying another message for Kasey because Ethan's blog site is still blocked from her.
Here is Kasey's message:
Hi everyone, I'm still unable to access Ethan's blog from the hospital room. I've been told it was fixed, but unfortunately it hasn't. Please continue to be in prayer for these kinks to be worked out, because I'm feeling a huge sense of loss not being able to "blog". In the meantime, I've asked Hollie to post this message again for me. Ethan is about to have his 2nd radiation treatment today, later this afternoon. He's done great so far, and has even done well with the anesthesia. The hardest part is the 4 hours before each treatment in which he cannot eat. The mornings are rough, but he's more subdued in the afternoons, so he's not as irritable. My mental state is still a grouchy one, though I am working on it! It seems that the "big" things I'm able to handle, but the small things seem to put me over the irritable edge. I am in need of a serious attitude adjustment and I'm praying that the Lord renews my spirit. The wonderful part of it is that Ethan is doing great. That's been my prayer all along and he's doing great. His spirits are in excellent shape (except when he's hungry and not allowed to eat). I sometimes thinks he's mad at me when he looks right at me crying wanting a bottle and wondering why I'm not giving it to him.... that part breaks my heart. After this afternoon's radiation, only two more days. Saturday and Sunday he will get chemo. Hopefully I can directly blog and "vent" more very soon, I need to get some stuff out of my system, I think! I miss all of you... sounds funny, but not being able to access Ethan's site really leaves me feeling so "disconnected". Your comments are sent to my email though, so I can read what you're saying regardless of whether or not I can access the blog. Until later....
Here is Kasey's message:
Hi everyone, I'm still unable to access Ethan's blog from the hospital room. I've been told it was fixed, but unfortunately it hasn't. Please continue to be in prayer for these kinks to be worked out, because I'm feeling a huge sense of loss not being able to "blog". In the meantime, I've asked Hollie to post this message again for me. Ethan is about to have his 2nd radiation treatment today, later this afternoon. He's done great so far, and has even done well with the anesthesia. The hardest part is the 4 hours before each treatment in which he cannot eat. The mornings are rough, but he's more subdued in the afternoons, so he's not as irritable. My mental state is still a grouchy one, though I am working on it! It seems that the "big" things I'm able to handle, but the small things seem to put me over the irritable edge. I am in need of a serious attitude adjustment and I'm praying that the Lord renews my spirit. The wonderful part of it is that Ethan is doing great. That's been my prayer all along and he's doing great. His spirits are in excellent shape (except when he's hungry and not allowed to eat). I sometimes thinks he's mad at me when he looks right at me crying wanting a bottle and wondering why I'm not giving it to him.... that part breaks my heart. After this afternoon's radiation, only two more days. Saturday and Sunday he will get chemo. Hopefully I can directly blog and "vent" more very soon, I need to get some stuff out of my system, I think! I miss all of you... sounds funny, but not being able to access Ethan's site really leaves me feeling so "disconnected". Your comments are sent to my email though, so I can read what you're saying regardless of whether or not I can access the blog. Until later....
Tuesday, August 5, 2008
Update
Hi everyone, I am one of Kasey's blogger friends (Hollie) and Kasey has asked me to share this message with you as she is currently unable to access her blog at the hospital. The site is considered a "blocked" site through the hospital's internet network and she's actively working to see if they will un-block it for her. Please be in prayer that this will happen. Otherwise, she will have to go across the street to Starbucks to make any updates to the site and she's very disappointed by that possibility. Here is the rest of Kasey's note.....
Hi friends, well, it's been a long day and a half. I will go into more detail when I feel up to it, but Ethan was put to sleep for his first round of radiation, and it went well. He will get another session this afternoon, and two more each day through Friday. Please pray for the times in between that he is not allowed to eat. This morning was particularly difficult for him as he had to wait. Please also pray for the Lord's particular protection of Ethan's brain, heart, lungs, eyes, and liver during these radiation treatments. Please also pray for me to be able to get rest at night. There have been a few instances already that have kind of brought out the Jekyl & Hyde in me. Thank you for praying. Thank you very much. I hope to be able to have access to the blog here in the hospital room, so please be in prayer they will remove the restriction. All in all, Ethan is doing well. Mom, on the other hand, is a little weary. More later.....
Hi friends, well, it's been a long day and a half. I will go into more detail when I feel up to it, but Ethan was put to sleep for his first round of radiation, and it went well. He will get another session this afternoon, and two more each day through Friday. Please pray for the times in between that he is not allowed to eat. This morning was particularly difficult for him as he had to wait. Please also pray for the Lord's particular protection of Ethan's brain, heart, lungs, eyes, and liver during these radiation treatments. Please also pray for me to be able to get rest at night. There have been a few instances already that have kind of brought out the Jekyl & Hyde in me. Thank you for praying. Thank you very much. I hope to be able to have access to the blog here in the hospital room, so please be in prayer they will remove the restriction. All in all, Ethan is doing well. Mom, on the other hand, is a little weary. More later.....
Saturday, August 2, 2008
hello rubber, my name is road
It's in all honesty that I tell you this particular post has been floating around in my heart and mind for many days now. Actually, it's been months in the making, I guess. I've sat down at our computer to write this for about 3 days. I keep stopping and then coming back to it again and again. I have craved the words to best articulate what the Lord is so actively teaching me right now. I hesitate to even attempt to go on and finish this post now, as I feel that tomorrow, I will learn even more about this life we live... and the life we could live (I'll come back to that later).
Almost 4 months ago, our lives changed. In many ways. Next Friday night (minutes before midnight) it will be the 4 month "anniversary" of the moment complete and mind-numbing shock entered our lives. "Your baby son has leukemia. We believe it to be an extremely rare kind and needs to be admitted right away." The following days consisted of information that never carried a positive message or outlook on Ethan's life. "His spleen is extremely large and on the verge of rupture due to the certain cancer cells that are growing inside. Before we have a definitive diagnosis we need to begin chemotherapy right away, otherwise he'd not survive a ruptured spleen." After little over a week or so we received concrete evidence that proved the kind of leukemia that had attacked Ethan's little body. "Overall, childhood leukemia is quite treatable with a very high success rate... however... your son's particular strand is extremely rare as only 3 out of a million children get this particular form of leukemia and treatment will be quite difficult. The chance of long-term survival is 50/50." And then began the search for a bone marrow transplant donor. "Unfortunately, nothing about your son's case is easy. Due to the genetic makeup of your child, finding a donor match has been quite difficult. The best we can find is a cord blood donor that is a 4 out of 6 match, however we do feel this is the best option for him and need to move forward as opposed to searching further."
That is a very small synopsis of the information we'd been given over these past 4 months. And though all of it stands out fresh in my mind (how could it not?). What stands out even more is when his doctor recently told me, "It's amazing how well your son has done so far. In the very beginning, we were honestly not sure if he'd make it as there just isn't a lot of information out there about JMML, but look at him... he looks just great. He's done extremely better than we expected. It's amazing."
And that's why the verse in Corinthians has become so important to me.... your faith should not stand in the wisdom of men, but in the power of God. I have taken that verse to mean that any statistic we've been given, any research that appears to know how a child will respond or what his/her quality of life will be like... means nothing, compared to God's ability and desire to overcome these obstacles in our lives. I'm learning that He wants reasons to show us His power. He allow trials so that we can revel in His glory. There is a purpose to everything He allows to touch His children. And every situation, even most horrid in our eyes, is an opportunity for us to believe Him. An opportunity to see Him work wonders in our lives. So, if I'm going to hold fast or believe one thing or another about Ethan's life, I'm going to believe with complete walk-across-the-tight-rope-with-a-blindfold-and-no-safety-net kind of faith. At least that's what I've strived (and will strive) to do.
I've believed since April 20th when I felt a direct peace from the Lord that God was going to do a miraculous healing in Ethan's body. I thought maybe we could avoid having to go through the transplant, but later realized that however Ethan was cured would be a miracle and I didn't want to put limitations on however God wanted to work. And since that day, God has given me countless reasons to hope and believe in His power and His plan for Ethan's life. But it's even more than that.... but I'll explain in a minute.
Now, that's not to say that I've not struggled.
In fact, the struggle has often been quite an obstacle. Not a struggle in believing for the healing in Ethan's life right now, but struggling to believe that there is hope and joy after this for my life and for mine, Adam and Ethan's lives together down the road. In a sense, struggling and learning to wait for hope to come and learning to believe that it is coming, even when it's too dark to see it. Struggling to understand faith and coming to terms with what true faith really is. Struggling with letting go of certain desires for a time and be willing to trust that better days are ahead and desires will be restored. Struggling to trust that our lives are fully guided by the Lord's hands. And believing that those hands are filled with never-ending love, blessing, power, protection and all things good... even when they look to be guiding us into pain.
All along I've expressed this quest for the kind of faith that is unmistakeably evident in each of the scenarios in which Jesus' miracles were preformed. Just look in the Bible at Matthew chapter 9 for a few references. The little girl who was dead, yet Jesus gave her back to her family. The woman who had so much faith that Christ was who He said He was, that if she could only touch the hem of His robe, she'd be healed. She did. And she was. The two blind men who cried out for the mercy of the Lord desiring to be able to see again. Jesus healed them and that day forward were able to see. Or look in another account in the Bible and you'll find the story of the men who fought their way through the crowd and believed so fervently that Jesus could heal their crippled friend that they lowered him through the roof of the building so this man would have Jesus' attention. He did have Christ's attention. And the man got up and walked out.
Almost 4 months ago, our lives changed. In many ways. Next Friday night (minutes before midnight) it will be the 4 month "anniversary" of the moment complete and mind-numbing shock entered our lives. "Your baby son has leukemia. We believe it to be an extremely rare kind and needs to be admitted right away." The following days consisted of information that never carried a positive message or outlook on Ethan's life. "His spleen is extremely large and on the verge of rupture due to the certain cancer cells that are growing inside. Before we have a definitive diagnosis we need to begin chemotherapy right away, otherwise he'd not survive a ruptured spleen." After little over a week or so we received concrete evidence that proved the kind of leukemia that had attacked Ethan's little body. "Overall, childhood leukemia is quite treatable with a very high success rate... however... your son's particular strand is extremely rare as only 3 out of a million children get this particular form of leukemia and treatment will be quite difficult. The chance of long-term survival is 50/50." And then began the search for a bone marrow transplant donor. "Unfortunately, nothing about your son's case is easy. Due to the genetic makeup of your child, finding a donor match has been quite difficult. The best we can find is a cord blood donor that is a 4 out of 6 match, however we do feel this is the best option for him and need to move forward as opposed to searching further."
That is a very small synopsis of the information we'd been given over these past 4 months. And though all of it stands out fresh in my mind (how could it not?). What stands out even more is when his doctor recently told me, "It's amazing how well your son has done so far. In the very beginning, we were honestly not sure if he'd make it as there just isn't a lot of information out there about JMML, but look at him... he looks just great. He's done extremely better than we expected. It's amazing."
And that's why the verse in Corinthians has become so important to me.... your faith should not stand in the wisdom of men, but in the power of God. I have taken that verse to mean that any statistic we've been given, any research that appears to know how a child will respond or what his/her quality of life will be like... means nothing, compared to God's ability and desire to overcome these obstacles in our lives. I'm learning that He wants reasons to show us His power. He allow trials so that we can revel in His glory. There is a purpose to everything He allows to touch His children. And every situation, even most horrid in our eyes, is an opportunity for us to believe Him. An opportunity to see Him work wonders in our lives. So, if I'm going to hold fast or believe one thing or another about Ethan's life, I'm going to believe with complete walk-across-the-tight-rope-with-a-blindfold-and-no-safety-net kind of faith. At least that's what I've strived (and will strive) to do.
I've believed since April 20th when I felt a direct peace from the Lord that God was going to do a miraculous healing in Ethan's body. I thought maybe we could avoid having to go through the transplant, but later realized that however Ethan was cured would be a miracle and I didn't want to put limitations on however God wanted to work. And since that day, God has given me countless reasons to hope and believe in His power and His plan for Ethan's life. But it's even more than that.... but I'll explain in a minute.
Now, that's not to say that I've not struggled.
In fact, the struggle has often been quite an obstacle. Not a struggle in believing for the healing in Ethan's life right now, but struggling to believe that there is hope and joy after this for my life and for mine, Adam and Ethan's lives together down the road. In a sense, struggling and learning to wait for hope to come and learning to believe that it is coming, even when it's too dark to see it. Struggling to understand faith and coming to terms with what true faith really is. Struggling with letting go of certain desires for a time and be willing to trust that better days are ahead and desires will be restored. Struggling to trust that our lives are fully guided by the Lord's hands. And believing that those hands are filled with never-ending love, blessing, power, protection and all things good... even when they look to be guiding us into pain.
All along I've expressed this quest for the kind of faith that is unmistakeably evident in each of the scenarios in which Jesus' miracles were preformed. Just look in the Bible at Matthew chapter 9 for a few references. The little girl who was dead, yet Jesus gave her back to her family. The woman who had so much faith that Christ was who He said He was, that if she could only touch the hem of His robe, she'd be healed. She did. And she was. The two blind men who cried out for the mercy of the Lord desiring to be able to see again. Jesus healed them and that day forward were able to see. Or look in another account in the Bible and you'll find the story of the men who fought their way through the crowd and believed so fervently that Jesus could heal their crippled friend that they lowered him through the roof of the building so this man would have Jesus' attention. He did have Christ's attention. And the man got up and walked out.
I'm so touched by these examples, and there are many more... and before, my level of understanding would have stopped at the fact that "miracles happen". But I'm learning so much more. Much, much more. And I fear this will be a feeble attempt in explaining it to you.
For instance, if you look back at the story of the 2 blind men in Matthew chapter 9, in verses 28-30... "And when He had come into the house, the blind men came to Him. And Jesus said to them, “Do you believe that I am able to do this?” They said to Him, “Yes, Lord.” Then He touched their eyes, saying, “According to your faith let it be to you.” And their eyes were opened.
Now, growing up in a Christian home and in Christian schools, there is no telling how many times I've read those words. But lately, they've taken on a whole new meaning. And I don't mind admitting that it's a little unnerving.... but in a really good way.
"According to your faith".... there are many times that Jesus answered a request with that response. What does it mean?
Or what about the words of the verse, Matthew 21:21, "So Jesus answered and said to them, Assuredly, I say to you, if you have faith and do not doubt, you will not only do what was done to the fig tree, but also if you say to this mountain, ‘Be removed and be cast into the sea,’ it will be done."
"If you have faith and do not doubt"... that's in there for a reason. Those words are the key. And that concept, even command, is throughout the Bible. Faith and Believing, ridding ourselves of doubt. Ridding ourselves of the need to "see first". Ridding ourselves of the control we think we have. If we could just do it... if we could simplify our faith, our belief system... I read somewhere that trials enter our lives to help us "unlearn" something... some bad habit we've added to our belief system. Some wrong idea of God we've accepted along the way. It really is something very hard to do.
I mentioned long ago that I don't believe in random coincidences. I believe there are reasons and purposes to things that happen in our lives and that in those ways, if we're paying attention, God is showing us something. Well, last weekend I went to Barnes and Noble while Adam stayed with Ethan. I needed to exchange a few books and was REALLY wanting a new book to jump out at me. I stared at all the titles in the "Christian Inspiration" section for a long time. Actually a VERY long time. I hadn't realized that an hour had passed while I was looking. I grabbed a few books and found a seat there in the store. I read through a few pages, looking for something, but I wasn't finding it. At this point, it had been close to 2 hours and I knew Adam would be wondering what happened to me, so in a sort of disappointment that the Lord hadn't given me anything, I took the books back to the section I had scoured for so long. Right before I left to go buy a few cute books I found for Ethan, I spotted the title of a book that I must have looked right over many times...."Believing God" by Beth Moore. Now, I don't normally talk about books I read because I don't mean to suggest an author or their message is for your life, however I must say, this book was written for me... and I need to share this with you because it is confirming for me everything that I've wanted to know these past few months.
I didn't start reading it right away. I actually didn't start reading it until last night (I'm only on chapter 4). But God has used her words and Scripture references to already pierce my heart in an extremely meaningful way. I've been hovering over these thoughts and concepts about what faith really is... about what it is to believe God... to believe that this life is a gift from Him, and it's meant to be enjoyed through Him, but I struggled with actually connecting the dots. Yet, I have to tell you, it's amazing the picture you see when Someone fills in the lines for you.
What kind of life would we live if we truly believed the Lord. Not just believed in God, but believed every Word He's given us. Nothing about our relationship with Him is without faith. If we've made the decision to become a Christian, a child of God, then we had to extend faith that Jesus is the Son of God, was crucified for our sins, and rose from the grave after 3 days. If we can believe that, and not question, then why do we (or I) question the rest of it.
A verse that comes to mind can help me illustrate what I mean...
Jeremiah 29:11 - For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.
Yeah, but.... my son has cancer. Yeah, but.... I just went through a divorce. Yeah, but.... I just lost my job. Yeah, but.... my kids are all grown and I have no more purpose.
No. Stop. If you can believe that through Jesus you are going to go to Heaven one day, then believe the rest of it, too! The Lord says clearly... to give you a hopeful future, in spite what the pit looks like now.
There are so many other examples. He continually asks us to believe... to have faith... and it will be done. Is it really that simple? In a sense, yes, I think it is. I do not mean it to be so simple that we can rub a lamp and God will act as our "genie". But I do believe that we often times limit God's power because of our little faith. I don't know that we mean to do it... but I think that we ask and think so much smaller than we should. "Lord please bless this/that family". "Lord please help this/that person to find a job". "Lord please heal this/that child". Are they often times empty words because they weren't spoken with the appropriate passion or zeal in full faith that not only could God do that thing, but that He would do it?
Trust me, I understand this is a fine line. There are instances in which a prayer, spoken in what we truly believed was full and sincere faith, aren't answered in the way(s) we hoped. But does that change who God is? No. And it doesn't mean that there wasn't a purpose. In fact, the purpose of the unanswered prayer may have very well been more significant than if the prayer had been answered in the way we had hoped it would be. But, again, if we believe part of God, then we have to believe all of Him.... Romans 8:28 - "And we know that all things work together for good to those who love God, to those who are the called according to His purpose".
This overall concept has strengthened my heart. For months I've been sharing with you the revelations of "faith" that the Lord has continued to bring across my path. Walking on the water, the corvette, the devotional book with reference after reference of "faith" day after day... it's all coming together for me now, and even still I feel I'm just on the brink of all that there is to learn. But in just one day from now, all of this preparing, this spiritual strength-training will be set in motion. Hence, this is where the rubber meets the road for me.
Monday, we will leave for Boston, and enter into the world where I have zero control. There is no, "well, if God doesn't come through for me, then I'll just do ______ myself". No. There's none of that. Simply because there is nothing I can do to save my son. There's nothing I can do to spare him any pain or complication. For the first time in my life, I think I might understand what Abraham felt like when he walked up the mountain with Isaac, mentally preparing himself that God might possibly take his son away from him. The complete vulnerability of truly needing God's mercy. And yet, at the same time, I think I might also understand the apparent calmness that Abraham exudes in the words of Scripture. He knew his God, and he believed the promises He'd given.
He had faith. What else did he have? Nothing. He had the odds-are-against-me-I've-been-asked-to-sacrifice-my-son-but-I'm-not-worried kind of faith.
And in the end, his son's life was spared...
... from even the slightest of pain.
Oh Lord, I'm almost there. Your truth is within my grasp. Help me to grab hold fully and to be simple. I know Ethan's life will be given back to us. And if I know that wonderful miracle is ours, then I know I don't have to accept that he will have to suffer through the healing process. Your power is not limited to one blessing. You've given us the gift of Heaven, eternal life, through believing You are who You say You are. But You do not stop there. You've also given us this life on earth to live fully, to enjoy fully, and to know you more deeply. Protect him, Father, from any pain or complication. Ethan is your chosen vessel, to spread your Word and your power. Please protect him from any harm as You carry out your wonderful plan for His life. Thank you for what my son has taught me. Thank you for being so very sweet to me in what you're doing in my life. I will remember, Lord. And I will tell the wonders of Your hands. Amen.
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