Today has been such a wonderful day of blessing for me and Adam (and, of course, Ethan!).
Blessing # 1: The Lord has blessed us with not one, but two huge financial blessings between last night and this morning. Not to mention the financial blessings we've received from many of our friends and family throughout this process with Ethan. Each one of you who have contributed in any way, please know that we are deeply moved by your generosity. We are constantly shown kindness and love and we are so very thankful. In addition to that, we found out today that the hospital has a foundation in which they pay for a particular bill for a family who has a child with cancer. So, as a complete shock to us, our rent for the month of June is going to be paid for through this particular foundation. My mouth dropped when the social worker told me that this morning. Through this foundation and through those of you who attended the school's Spring concert last night and gave to the love offering - we've been not only EXTREMELY SURPRISED, but also extremely touched. Thank you, Lord for your continued goodness.
Blessing #2: Ethan has done well so far with his chemo. No side effects or complications so far! His central line (the port in his chest) keeps bleeding, so pray for no infection to occur, but with everything else, so far so good!!
And finally, drum roll please.......
Blessing #3: I received an email from our contact at Boston Children's Hospital today that said they have found 12 (yes, TWELVE!!) preliminary donor matches for Ethan! They will search within those results for the best possible match for Ethan. Be in prayer that they find the perfect match right away, AND that the donor will be willing to move forward (they always have a choice to decline).
I am so overcome with emotion today. Adam and I both are. It's as if we've received one piece of surprisingly good news after another and what a rare joy that is! We are so very thankful... for so many things. So very blessed to be under the care of the Lord's hand.
Nehemiah 8:10 Then he said unto them, Go your way, eat the fat, and drink the sweet, and send portions unto them for whom nothing is prepared: for this day is holy unto our Lord: neither be ye sorry; for the joy of the LORD is your strength.
Friday, May 30, 2008
Thursday, May 29, 2008
Third Round of Chemo
Thank you for your prayers for wisdom as we got readmitted today. I had a good conversation with Ethan's doctor and feel good about the plan of action for this round of chemo. His previous chemo treatments have consisted of one chemo medication. This time, we will be here about 8 or 9 days and he will get a total of three variations of chemotherapy while in the hospital. The one he's been getting, plus two others. This is necessary to help his spleen decrease in size (so they don't have to remove it) as well as to expose the leukemia cells to other medications so as to not build a resistance to the overall treatment.
One of the chemo meds that Ethan will be taking has a slight risk of damaging Ethan's good DNA cells and cause organ/nerve damage, so be in prayer that does not happen. The other chemo med puts his immune system at greater risk of infections (his body wouldn't be able to fight bacteria), so please be in prayer that no infection sets in and no fever surfaces. Of course, the last chemo medication is the same he's had before so pray for no mucositis (mouth sores) and no eye swelling. No additional rectal tears would be nice, too!
My prayer today as we were readmitted was that Ethan's body would remain strong during this next chemo session, and that the medications would only do good to him and not harm. And that we'd see a drastic change in the size of his spleen (smaller not bigger!) Thank you for joining us in those prayers!
One of the chemo meds that Ethan will be taking has a slight risk of damaging Ethan's good DNA cells and cause organ/nerve damage, so be in prayer that does not happen. The other chemo med puts his immune system at greater risk of infections (his body wouldn't be able to fight bacteria), so please be in prayer that no infection sets in and no fever surfaces. Of course, the last chemo medication is the same he's had before so pray for no mucositis (mouth sores) and no eye swelling. No additional rectal tears would be nice, too!
My prayer today as we were readmitted was that Ethan's body would remain strong during this next chemo session, and that the medications would only do good to him and not harm. And that we'd see a drastic change in the size of his spleen (smaller not bigger!) Thank you for joining us in those prayers!
Wednesday, May 28, 2008
Life
It dawned on me this weekend that somewhere along this "cancer road" with Ethan, I've lost sight of LIFE. Life as in LIVING. Without even really seeing it coming, the mindset of "death" had settled into my being and taken root. Not really about any one particular thing, but about everything. My joy has been dead. My future (in my mind) has been dead. Any desires I had about enjoying my life with Adam and Ethan - died. It's as if one day I was walking along the road of life, not a care in the world, then out of nowhere a large wall fell right in front of me. I couldn't see around it. I couldn't see over it. All I could see was this large, depressing wall. No cracks in its surface to show bits of sunshine. No hidden rope or ladder to aid me in climbing over it. Nothing. Just a wall. Stopping me cold in my tracks. Stopping everything. And I had eventually given into the fact that this wall was going to always be in my way. And I'd never be able to do anything about it, so I just sat down... and stayed there. Thinking that everything was over. No more happy days. No more dreams fulfilled. Even thoughts that God wasn't finished "taking" from me. No hope for the future. That's the kind of death I mean.
But, the last few days, God has tenderly reminded me that there is life. And not only life, but so much left to be lived and enjoyed. So much more to give. So much to be thankful for. So much more in store for me, for Adam, for Ethan... for us together. In an effort to start chipping away at the wall, I started looking purposefully at all the things in which I have to be thankful. The list could go on forever, but I'll write a few here.
1. My husband is proof of God's deep love for me. Giving me Adam has been one of the sweetest, most generous gifts the Lord has ever given me (this side of Heaven).
2. My baby boy just celebrated 4 months of life! And he is more of a cutie than I could have ever imagined.
3. Even though my little Ethan has cancer swimming in his blood, we still have the ability to make fun memories together. And though there are scary procedures and stays in the hospital that we have to endure, we also have the TREMENDOUS blessing of being able to come home in between, and live the life of a normal family.
4. The rest of Ethan's body is perfectly normal. His limbs work perfectly, his mind is alert, his eyes are curious, he babbles like a baby should, his ears hear sounds around him, his heart is healthy, his brain is healthy, he's extremely active and strong (kicking, grasping and rolling all the time), his feet are precious, his smile is contagious, his eyes are big and beautiful.... he was fearfully and wonderfully made... and you see all those wonderful details every day.
5. The love and support we've received during this trial has been absolutely touching. I've never experienced so much compassion in my life. There is a website I can go to and see all the locations that view Ethan's blog. Did you know that there are about 25 or so states that view this website (not to mention all the cities within those states)? Did you know that there are people in Canada, the Ukraine, Romania, Bermuta, the United Kingdom, Singapore, Australia, Taiwan, China, Peru, and Bangladesh that read this site? And I can only assume that if people are reading, then they are also praying. What an overwhelming encouragement to mine and Adam's heart. Our parents, sisters and brother-in-laws, extended family, old friends, new friends and those we've never officially met... we are so very thankful for you all.
6. Prayers. I am so thankful for the ability to pray and have prayers answered.
7. Thankful for the other moms who have contacted me. Some are in the midst of their own struggles with sick children, and others have been where I am now and seek to share their encouragement of having come out successful on the other end. What a sweet comfort to know that as a mom, there are others who's struggle is the same and that I am not alone in this particular insanity.
8. And I'll close this particular list of thanksgiving by saying how thankful I am for the Lord. His comfort is real. His peace is there when nothing make sense. He continues to be patient with me even though, at times, I am fighting against Him as opposed to fighting this WITH Him. And He gave me the gift of a son. And though it would appear that the gift has been a bit tampered with... only He can mend the packaging once more. He does that for us all of the time. And He will do it again.
John 11:4 When Jesus heard that, he said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.
Psalms 23:1-6 The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.
Before I go, I have a praise report! Throughout this past session of chemo and the at home medications, Ethan's good blood counts kept going down, and the bad cells rose slightly. Thus, he continued to need transfusions (we were practically at the hospital for outpatient visits every day)... however, yesterday afternoon he had another round of blood drawn and I got the call last night with the results. Over the weekend, his good cells went up in number and his bad cells dropped! What a tremendous surprise... especially since he hadn't had a transfusion since last Friday and the medication at home stopped on Sunday. I was beyond thrilled! THANK YOU FOR PRAYING! We go back to the hospital tomorrow (Thursday) morning for bloodwork and will be readmitted later in the afternoon. Be in prayer for my discussion with the doctor as we determine the direction we need to take for this next round of chemo for Ethan. Also be in prayer once again for no side effects and no pain for our little man.
As difficult as it is to move into accepting that our baby has cancer... the cancer itself is subject to God's power. And with the God that we serve, there is more power in a single breath of His being (take a quick breath yourself to fully understand) than the "power" cancer appears to have in Ethan's body.
1 Corinthians 2:5 That your faith should not stand in the wisdom of men, but in the power of God.
But, the last few days, God has tenderly reminded me that there is life. And not only life, but so much left to be lived and enjoyed. So much more to give. So much to be thankful for. So much more in store for me, for Adam, for Ethan... for us together. In an effort to start chipping away at the wall, I started looking purposefully at all the things in which I have to be thankful. The list could go on forever, but I'll write a few here.
1. My husband is proof of God's deep love for me. Giving me Adam has been one of the sweetest, most generous gifts the Lord has ever given me (this side of Heaven).
2. My baby boy just celebrated 4 months of life! And he is more of a cutie than I could have ever imagined.
3. Even though my little Ethan has cancer swimming in his blood, we still have the ability to make fun memories together. And though there are scary procedures and stays in the hospital that we have to endure, we also have the TREMENDOUS blessing of being able to come home in between, and live the life of a normal family.
4. The rest of Ethan's body is perfectly normal. His limbs work perfectly, his mind is alert, his eyes are curious, he babbles like a baby should, his ears hear sounds around him, his heart is healthy, his brain is healthy, he's extremely active and strong (kicking, grasping and rolling all the time), his feet are precious, his smile is contagious, his eyes are big and beautiful.... he was fearfully and wonderfully made... and you see all those wonderful details every day.
5. The love and support we've received during this trial has been absolutely touching. I've never experienced so much compassion in my life. There is a website I can go to and see all the locations that view Ethan's blog. Did you know that there are about 25 or so states that view this website (not to mention all the cities within those states)? Did you know that there are people in Canada, the Ukraine, Romania, Bermuta, the United Kingdom, Singapore, Australia, Taiwan, China, Peru, and Bangladesh that read this site? And I can only assume that if people are reading, then they are also praying. What an overwhelming encouragement to mine and Adam's heart. Our parents, sisters and brother-in-laws, extended family, old friends, new friends and those we've never officially met... we are so very thankful for you all.
6. Prayers. I am so thankful for the ability to pray and have prayers answered.
7. Thankful for the other moms who have contacted me. Some are in the midst of their own struggles with sick children, and others have been where I am now and seek to share their encouragement of having come out successful on the other end. What a sweet comfort to know that as a mom, there are others who's struggle is the same and that I am not alone in this particular insanity.
8. And I'll close this particular list of thanksgiving by saying how thankful I am for the Lord. His comfort is real. His peace is there when nothing make sense. He continues to be patient with me even though, at times, I am fighting against Him as opposed to fighting this WITH Him. And He gave me the gift of a son. And though it would appear that the gift has been a bit tampered with... only He can mend the packaging once more. He does that for us all of the time. And He will do it again.
John 11:4 When Jesus heard that, he said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.
Psalms 23:1-6 The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.
Before I go, I have a praise report! Throughout this past session of chemo and the at home medications, Ethan's good blood counts kept going down, and the bad cells rose slightly. Thus, he continued to need transfusions (we were practically at the hospital for outpatient visits every day)... however, yesterday afternoon he had another round of blood drawn and I got the call last night with the results. Over the weekend, his good cells went up in number and his bad cells dropped! What a tremendous surprise... especially since he hadn't had a transfusion since last Friday and the medication at home stopped on Sunday. I was beyond thrilled! THANK YOU FOR PRAYING! We go back to the hospital tomorrow (Thursday) morning for bloodwork and will be readmitted later in the afternoon. Be in prayer for my discussion with the doctor as we determine the direction we need to take for this next round of chemo for Ethan. Also be in prayer once again for no side effects and no pain for our little man.
As difficult as it is to move into accepting that our baby has cancer... the cancer itself is subject to God's power. And with the God that we serve, there is more power in a single breath of His being (take a quick breath yourself to fully understand) than the "power" cancer appears to have in Ethan's body.
1 Corinthians 2:5 That your faith should not stand in the wisdom of men, but in the power of God.
Monday, May 26, 2008
New Pictures
I've updated some of the new pictures on the side of the blog (look to the right), as well as posted some new ones here. Happy Four Months and first Memorial Day, Ethan! Oh, and since all the pics I normally post are of his adorable smile, I thought I'd share one of his "not so happy" moments as well! I'm quite confident he had enough of all the camera flashing over the past couple of days.
Be in prayer for his spleen to shrink and for blood counts to stabilize as we go back for another outpatient visit tomorrow (Tuesday). His spleen is a little bit larger than it has been over the past couple of weeks and he needed more blood transfusions this time around at home than he did the last time. I'm hoping to talk with the doctor tomorrow about whether or not this last round of chemo was as effective as the first time (we used a weaker dose this last time). Regardless, we will be re-admitted on Thursday for another session of chemo treatments. Be in prayer that wisdom is given to us and the doctors as we discuss the plan of action this time around.
Big Hugs to you all.
p.s. - Please be in prayer for baby Lydia (see bottom right of my blog for her website link). She is currently undergoing a bone marrow transplant and her mom updates the site with prayer requests as they come up. She has infant leukemia and is only about 8 months old, I think. As I read her website (updated by her mom, Liz), I know that we will soon be in her shoes.
Saturday, May 24, 2008
Refiner and Purifier of Silver
A very kind and thoughtful friend sent me this lovely "story" via email. I decided to post it, because I find it so extremely fitting for this time in mine and Adam's life... and maybe you would find it fitting in your life as well.
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Malachi 3:3 says: 'He will sit as a refiner and purifier of silver.'
((((
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining Silver.
As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: 'He sits as a refiner and purifier of silver.' She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, 'How do you know when the silver is fully refined?' He smiled at her and answered, 'Oh, that's easy -- when I see my image in it.'
(((
p.s. - Happy Birthday to my hubby today!
Friday, May 23, 2008
Happy 4 months, Ethan!
Today we do have to go back to the hospital here in Connecticut for another outpatient visit. Ethan's red blood cells were slightly low, so he needs a transfusion to get him through the long weekend. But the fun news is that Ethan is 4 months old today! My sister and her husband are flying in from Texas later this afternoon and I'm so excited to see them. How wonderful that we can celebrate Ethan's 4 months of life together with them!
Not to take away from my cutie's big day, but the truth is my heart is heavy today. I've been battling quite a bit of "junk" in my mind lately... and I feel I am on the verge of the Lord really showing me something that He needs me to understand or grasp. The idea that Ethan's situation is in part meant to teach me something about God and about myself, isn't lost on me. It's trying to figure out what it is I'm supposed to be learning that is causing me some trouble. I think I have touched the brink of what the Lord is trying to teach me and show me... and in all honesty, it's a hard revelation.
I'm learning that I am a very selfish person. I know my heart and I know it's true. I know I am not alone with that struggle, but nonetheless it is my struggle. And as I currently face the reality of "me", it's not a pretty picture. Deep down in the depths of my being there are layers and layers of absolute yuck that leak out so slowly and quietly that you'd never even know such a mess existed. But it does exist and it's there deep inside of me, never to have been dealt with before.
Coming face to face with my need and dependence on the Lord with regard to Ethan's life, He is at the same time showing me the areas in which I need Him in my own life. It is such a hard thing. Something I doubt I can even properly describe in words, except to say that I feel like there is a sort of "spring cleaning" happening in my life (and it's not the fun kind where you get to have a yard sale and make some money!)... no, instead it's a type of painful purging... and as the doors of each of my inner closets (for lack of better word) are being opened and dug through, there are items (areas) that need to be tossed out and let go of. Therein lies the part of the struggle. Nothing is hidden from God. So as He cleans out my closets, He's asking me tough questions about my willingness to let go of the items I've grown so used to carrying around with me. Control. Selfishness. Doubt. Laziness. Pain. Disappointment. Fear. Not just about this situation with my son, but also about my future as well as past things that have built up and never really been released.
I believe I understand what the clay must feel like when it thinks it's close to completion... close to being the vase or sculpture it was meant to be, only to have the potter smash it down and start over because there were areas inside the mold that needed to be smoothed out or it would crack down the road. That's best way I can describe what's going on in my life right now. And no, it isn't fun. In fact, it's very (very!) hard. And I want to give up, but I can't. It's as if this situation with Ethan has forced this cleansing and purging in my own life that has probably been needed for years. I need these areas cleaned up so that I have nothing left in me except the joy and peace of the Lord... not just for a moment but for a lifetime.
Imagine a line was drawn in the sand and on one side there was complete acceptance and understanding of God, His love, complete trust and joy in the Lord, but on the other side was my own need to control, worry, fear, etc. Throughout my life, I have tended to always put one foot on each side. So there would be days of love, joy and trust... but then there'd be days of the worry, fear and selfishness. I feel now that God is trying to pull me over to His side permanently and yet there's such a force trying to pull me the other direction. A spiritual tug-of-war. And though I want to live in complete understanding of who God is and His love for me, I'm stuck in the middle. I don't know how else to describe it other than I know this is a process. I feel like the light would turn on in my soul if I'd only flip the switch, but I can't seem to reach it just now. Darkness appears to be where I've settled. I don't want to stay here, but I can't seem to move until I've dealt with the areas that have already been exposed to the Light. And that takes work. There is much the Lord wants me to learn and realize about Himself, but I need the strength to do so.
I don't have much of a point other than to say that I'm truly in the middle of this. All of this.
And I'm trying....
Isaiah 64:8 But now, O LORD, thou art our Father; we are the clay, and thou our potter; and we all are the work of thy hand.
Not to take away from my cutie's big day, but the truth is my heart is heavy today. I've been battling quite a bit of "junk" in my mind lately... and I feel I am on the verge of the Lord really showing me something that He needs me to understand or grasp. The idea that Ethan's situation is in part meant to teach me something about God and about myself, isn't lost on me. It's trying to figure out what it is I'm supposed to be learning that is causing me some trouble. I think I have touched the brink of what the Lord is trying to teach me and show me... and in all honesty, it's a hard revelation.
I'm learning that I am a very selfish person. I know my heart and I know it's true. I know I am not alone with that struggle, but nonetheless it is my struggle. And as I currently face the reality of "me", it's not a pretty picture. Deep down in the depths of my being there are layers and layers of absolute yuck that leak out so slowly and quietly that you'd never even know such a mess existed. But it does exist and it's there deep inside of me, never to have been dealt with before.
Coming face to face with my need and dependence on the Lord with regard to Ethan's life, He is at the same time showing me the areas in which I need Him in my own life. It is such a hard thing. Something I doubt I can even properly describe in words, except to say that I feel like there is a sort of "spring cleaning" happening in my life (and it's not the fun kind where you get to have a yard sale and make some money!)... no, instead it's a type of painful purging... and as the doors of each of my inner closets (for lack of better word) are being opened and dug through, there are items (areas) that need to be tossed out and let go of. Therein lies the part of the struggle. Nothing is hidden from God. So as He cleans out my closets, He's asking me tough questions about my willingness to let go of the items I've grown so used to carrying around with me. Control. Selfishness. Doubt. Laziness. Pain. Disappointment. Fear. Not just about this situation with my son, but also about my future as well as past things that have built up and never really been released.
I believe I understand what the clay must feel like when it thinks it's close to completion... close to being the vase or sculpture it was meant to be, only to have the potter smash it down and start over because there were areas inside the mold that needed to be smoothed out or it would crack down the road. That's best way I can describe what's going on in my life right now. And no, it isn't fun. In fact, it's very (very!) hard. And I want to give up, but I can't. It's as if this situation with Ethan has forced this cleansing and purging in my own life that has probably been needed for years. I need these areas cleaned up so that I have nothing left in me except the joy and peace of the Lord... not just for a moment but for a lifetime.
Imagine a line was drawn in the sand and on one side there was complete acceptance and understanding of God, His love, complete trust and joy in the Lord, but on the other side was my own need to control, worry, fear, etc. Throughout my life, I have tended to always put one foot on each side. So there would be days of love, joy and trust... but then there'd be days of the worry, fear and selfishness. I feel now that God is trying to pull me over to His side permanently and yet there's such a force trying to pull me the other direction. A spiritual tug-of-war. And though I want to live in complete understanding of who God is and His love for me, I'm stuck in the middle. I don't know how else to describe it other than I know this is a process. I feel like the light would turn on in my soul if I'd only flip the switch, but I can't seem to reach it just now. Darkness appears to be where I've settled. I don't want to stay here, but I can't seem to move until I've dealt with the areas that have already been exposed to the Light. And that takes work. There is much the Lord wants me to learn and realize about Himself, but I need the strength to do so.
I don't have much of a point other than to say that I'm truly in the middle of this. All of this.
And I'm trying....
Isaiah 64:8 But now, O LORD, thou art our Father; we are the clay, and thou our potter; and we all are the work of thy hand.
Wednesday, May 21, 2008
Peace
I need to start by saying that God not only heard all of your prayers for us today, but He honored and answered every one of them. Thank you so much for giving us the blessings of your prayers.... as they were a TRUE blessing for us. Aside from the fact that we were traveling to the pediatric cancer center at Boston Children's Hospital today, we had a wonderful day together as a family. Ethan could not have been better throughout the entire trip. He slept of most of the 2 hours to Boston and the 2 hours back to Connecticut. And during the appointment with the doctor he sat in my lap, or laid back in his stroller, babbling and looking about, and smiled repeatedly at the doctor. He was a perfect angel and for a child who does not like to be restricted (he is a very active baby!), he was extremely content today. It was such a blessing for Adam and I to both be able to completely focus on what the doctor had to share with us. Thank you so much for praying for that specific area of concern!
Our morning started off fine, though slightly busy. We had to make a stop at the Children's Hospital here in Connecticut this morning before heading to Boston so that Ethan could get another transfusion of platelets. From there, we headed towards our consultation in Boston. The drive was nice. Adam and I shared some concerns, but overall we just had fun and enjoyed each other's company. However, when Adam and I were driving around the parking garage in Boston, looking for a spot, a sick feeling settled into the pit of my stomach as I realized once again that my little boy has cancer. Of course, I know and have known of his disease for over a month and a half now... sometimes it just hits you right between the eyes all over again. And it did this afternoon. We made our way to the cancer floor and got checked in. I was able to feed Ethan while we waited to be called back for the consultation. As we waited we were able to read over a packet of information that explains a lot of the logistics of the transplant, room amenities for me while I stay with Ethan, etc. The hospital is very nice. It was our first visit there, and we were immediately impressed with the entire layout and the surrounding areas. I was starting to feel a peace come over me as I have been dreading the whole "Boston" thing. I've been mildly depressed about having to "live" there for 2 or so months, away from my home, my husband and all my comfort zones, but... after seeing the actual place, and learning about what areas outside of the hospital I will have access to, I started to really feel comfortable with everything... and that was before we even met with the doctor.
When we finally met with the doctor, Adam and I felt very relieved. Her demeanor and personality immediately put us at ease. And even though she had some tough information to give us, she also was very encouraging and hopeful about Ethan's situation. She was patient with us in answering all of our questions and shared with us all of the next steps that will take place. She was very thorough and earned our trust right away. Without even finishing the conversation with her, Adam and I both felt at peace about moving forward with the direction of the transplant. Yes, there are areas of risk, but we have to recognize that our job as parents is to handle all of the areas that we can, and leave to God the areas in which we have no control. I could go on and on about all of the details, but I'll simply say that we felt such peace today about what we needed to do for Ethan and we recognize that it was through the help of your prayers for such peace and such clarity. Thank you. Thank you. Thank you. I am continually encouraged and blessed by your emails, comments, cards and prayers. This would surely be a long, lonely road for us without your love and support. Family. Friends. Strangers. Every one of you. Even if you've never sent us a card or an email, I'm still talking to you. Because I know many out there read this blog and pray for us regularly, and that knowledge alone gets me through the day.
So... what now? Well, there is still no match for Ethan. Not to say that they haven't truly found one, it's just that they are still in the middle of the search. There are various details involved so it takes a long time. The doctor estimated the transplant would happen in July with about a 2 month stay in Boston afterwards before being discharged back to Connecticut. Due to the dangers and risks involved I would like to ask that you join us in starting to pray even now against such dangers and risks. I am so encouraged by your prayers as, so far, every time I have asked for prayer from you, the Lord has been faithful. I'd like to continue that trend and begin praying God's protection over Ethan in each of the following ways:
1. Pray that they do not have to use radiation as a part of Ethan's treatment. They are hopeful they won't have to, but it is possible that they might. Radiation can stunt his growth since he is a baby and can cause problems with his spinal cord.
2. Infertility is a possible side effect from all of the treatments Ethan will endure. (When the doctor said that, my heart sank and I immediately imagined Ethan having to tell his future wife that he'd not be able to have kids). Of all the things she shared with us, that is the one thing that brought tears to my eyes. Pray that infertility will not be an issue with him and that God would allow Ethan and his future wife all the children they desire.
3. Pray also against a specific side effect called GVHD (Graft-versus-host disease). It has varying degrees of problems, but the most basic way to describe it is that the donor's bone marrow cells attack Ethan's body. It can be in a mild form, or in a very chronic form. Please pray that NO FORM of GVHD happens in Ethan's body.
4. As they are conducting the donor search, though we will be happy with whatever match comes available for Ethan, the BEST scenario of a match for him would be a younger (age 20's or 30's) male. Please be in prayer that Ethan's donor fit that description.
5. Please pray that the match is found quickly and that transplant can happen before July... basically because the sooner the better for Ethan's sake. And continue to pray that the cost of the search does not exceed the amount allotted for it.
6. Pray that Ethan has no complications with the transplant (there is a 10% chance that a patient could die during transplant) and that we are able to come back to Connecticut within 6 to 8 weeks following the transplant and not have to stay in Boston longer due to complications or infections.
7. Pray that Ethan continues to respond to the chemo and the "at home" treatments he currently undergoes, as that keeps him stable as we wait for the transplant. Pray against infection, fever, that his body doesn't build a resistance to the medications and for the bad cells stay low and the good cells stay high... and that we continue to be able to come home in between chemo treatments as that is a special "family blessing" for us.
Our morning started off fine, though slightly busy. We had to make a stop at the Children's Hospital here in Connecticut this morning before heading to Boston so that Ethan could get another transfusion of platelets. From there, we headed towards our consultation in Boston. The drive was nice. Adam and I shared some concerns, but overall we just had fun and enjoyed each other's company. However, when Adam and I were driving around the parking garage in Boston, looking for a spot, a sick feeling settled into the pit of my stomach as I realized once again that my little boy has cancer. Of course, I know and have known of his disease for over a month and a half now... sometimes it just hits you right between the eyes all over again. And it did this afternoon. We made our way to the cancer floor and got checked in. I was able to feed Ethan while we waited to be called back for the consultation. As we waited we were able to read over a packet of information that explains a lot of the logistics of the transplant, room amenities for me while I stay with Ethan, etc. The hospital is very nice. It was our first visit there, and we were immediately impressed with the entire layout and the surrounding areas. I was starting to feel a peace come over me as I have been dreading the whole "Boston" thing. I've been mildly depressed about having to "live" there for 2 or so months, away from my home, my husband and all my comfort zones, but... after seeing the actual place, and learning about what areas outside of the hospital I will have access to, I started to really feel comfortable with everything... and that was before we even met with the doctor.
When we finally met with the doctor, Adam and I felt very relieved. Her demeanor and personality immediately put us at ease. And even though she had some tough information to give us, she also was very encouraging and hopeful about Ethan's situation. She was patient with us in answering all of our questions and shared with us all of the next steps that will take place. She was very thorough and earned our trust right away. Without even finishing the conversation with her, Adam and I both felt at peace about moving forward with the direction of the transplant. Yes, there are areas of risk, but we have to recognize that our job as parents is to handle all of the areas that we can, and leave to God the areas in which we have no control. I could go on and on about all of the details, but I'll simply say that we felt such peace today about what we needed to do for Ethan and we recognize that it was through the help of your prayers for such peace and such clarity. Thank you. Thank you. Thank you. I am continually encouraged and blessed by your emails, comments, cards and prayers. This would surely be a long, lonely road for us without your love and support. Family. Friends. Strangers. Every one of you. Even if you've never sent us a card or an email, I'm still talking to you. Because I know many out there read this blog and pray for us regularly, and that knowledge alone gets me through the day.
So... what now? Well, there is still no match for Ethan. Not to say that they haven't truly found one, it's just that they are still in the middle of the search. There are various details involved so it takes a long time. The doctor estimated the transplant would happen in July with about a 2 month stay in Boston afterwards before being discharged back to Connecticut. Due to the dangers and risks involved I would like to ask that you join us in starting to pray even now against such dangers and risks. I am so encouraged by your prayers as, so far, every time I have asked for prayer from you, the Lord has been faithful. I'd like to continue that trend and begin praying God's protection over Ethan in each of the following ways:
1. Pray that they do not have to use radiation as a part of Ethan's treatment. They are hopeful they won't have to, but it is possible that they might. Radiation can stunt his growth since he is a baby and can cause problems with his spinal cord.
2. Infertility is a possible side effect from all of the treatments Ethan will endure. (When the doctor said that, my heart sank and I immediately imagined Ethan having to tell his future wife that he'd not be able to have kids). Of all the things she shared with us, that is the one thing that brought tears to my eyes. Pray that infertility will not be an issue with him and that God would allow Ethan and his future wife all the children they desire.
3. Pray also against a specific side effect called GVHD (Graft-versus-host disease). It has varying degrees of problems, but the most basic way to describe it is that the donor's bone marrow cells attack Ethan's body. It can be in a mild form, or in a very chronic form. Please pray that NO FORM of GVHD happens in Ethan's body.
4. As they are conducting the donor search, though we will be happy with whatever match comes available for Ethan, the BEST scenario of a match for him would be a younger (age 20's or 30's) male. Please be in prayer that Ethan's donor fit that description.
5. Please pray that the match is found quickly and that transplant can happen before July... basically because the sooner the better for Ethan's sake. And continue to pray that the cost of the search does not exceed the amount allotted for it.
6. Pray that Ethan has no complications with the transplant (there is a 10% chance that a patient could die during transplant) and that we are able to come back to Connecticut within 6 to 8 weeks following the transplant and not have to stay in Boston longer due to complications or infections.
7. Pray that Ethan continues to respond to the chemo and the "at home" treatments he currently undergoes, as that keeps him stable as we wait for the transplant. Pray against infection, fever, that his body doesn't build a resistance to the medications and for the bad cells stay low and the good cells stay high... and that we continue to be able to come home in between chemo treatments as that is a special "family blessing" for us.
8. Pray against the severe mouth sores (mucositis) that result from the transplant.
9. Pray for Adam and I to have the health and strength we need to endure these next 9 to 12 months.
I know this is a lot to remember and a lot to ask for your help in praying... however, these are the biggest areas of concern for our little baby boy and I only ask for your help in the most humble of ways as I know I need help in lifting up each of these specific areas. I believe prayer is needed even now for the protection Ethan will need in the near future. I'm sure there will be other requests that pop up, but these areas weigh the heaviest on my heart at this point. I have such a wonderful peace in knowing that all of us can bow before the throne of God and ask for His mercy, provision and grace over his precious child, Ethan, who IS fearfully and wonderfully made. As horrible and unfathomable as this whole situation is for us as parents, Ethan was created by God. Ethan has a purpose and I do not believe that his purpose is short-lived. God, who has the ability and the love to save my son and give him a life of special meaning here on earth, WILL hear our prayers. He already has. And has answered every one up to this point.
Thank you, Lord. Thank you for your clear peace... and even your joy today. Continue working your miracle in our baby boy. Continue to work your wonder in all of us.
p.s. - I have to take Ethan for another outpatient appointment tomorrow (Thursday) afternoon to check his red blood cell count. If they are too low, he will need another transfusion on Friday morning. Please pray for a positive jump in his number of red cells tomorrow!
Thank you again for all the prayers today. We felt every single one of them.
We love you all.
Tuesday, May 20, 2008
Here we go...
Tomorrow (Wednesday) Adam, Ethan and I head out to Boston for our first consultation appointment with the transplant area of Boston Children's Hospital. At our outpatient visit here in Connecticut yesterday, Ethan's doctor advised again that we should expect the consultation to be a bit rough... meaning, no "sugar-coated" information. He warned that the details and information we receive will be tough to hear and hard to digest. He then stated something that I hadn't really considered. He said after the appointment in Boston, Adam and I then have to make a decision about what road we want to choose with Ethan's treatment. I told him that I didn't think we had a choice - I thought a transplant was really our only option. He said that even though the chances of Ethan's survival are more increased with the transplant, it is still not guaranteed, and Ethan will potentially have a very difficult time with the details of the transplant since his disease is so hard to treat... and it's a very dangerous type of treatment.... with again, no guarantee of it working. The alternative would be to stay at the Connecticut Children's Hospital (where we are now) and go through a very hard and intensive chemotherapy treatment - much harder than he's been through to date - and hope that the chemo itself corrects the problem. However, the chances of JUST chemo curing the disease are very low. Either decision is full of risk and full of all kinds of possible side effects and dangers that no one wants to see their child endure. Adam and I are praying - and I'm asking you to be in prayer as well - that we make the decision God would have us to make. Adam and I need to both be at peace with the decision that is ahead of us... pray for absolute peace in both our minds about the kind of treatment that God wants Ethan to go through in order for his complete healing. There are many pros and cons that we have to consider with whatever treatment plan we decide upon. Pray with us that we will leave the meeting tomorrow afternoon and feel confident about the direction we need to take for our little boy. Please pray for safety as we travel to Boston and as a side note, be in prayer for Ethan's white blood count to start going back down (they rose slightly yesterday) and pray that his platelets go up in number (they were down slightly yesterday and he needed a transfusion at our outpatient visit).
Thank you so very much for your help in prayer during this time. I'm so very thankful for your kindness and your desire to pray for us. In my mind I have placed no limits on what God can do in healing Ethan's body. However, we need God's wisdom, strength and peace to make the right decision FOR that healing.
I don't want my little man suffering.... regardless of the path we take.... God, please don't allow him to suffer.
Thank you so very much for your help in prayer during this time. I'm so very thankful for your kindness and your desire to pray for us. In my mind I have placed no limits on what God can do in healing Ethan's body. However, we need God's wisdom, strength and peace to make the right decision FOR that healing.
I don't want my little man suffering.... regardless of the path we take.... God, please don't allow him to suffer.
Sunday, May 18, 2008
Adjusting
It's always strange the first few days we come back home after staying the hospital for a while. I don't think Ethan is phased by the change... he adapts fairly well to most things at this age. But it take a strange toll on me. I don't know how to describe it so that it would make sense to you, so I won't even try. Besides the weird transitions that take place in my mind and my behavior, I am, however, just really happy any time we're able to come home. I just want to be home... me, Adam and Ethan together in our own comfort zone... I truly long for that constantly... and am thankful we can have small spurts of that time when the 3 of us are all together. No interruptions, no lack of privacy, time to do what normal families do... at home.
I do have some updates for you and some new prayer requests:
I do have some updates for you and some new prayer requests:
- Ethan did not show any other side effects, aside from his whole rear end situation - and as of last night his little caboose looked sooooo much better (if not completely back to normal)! Thank you so much for praying for those things. No matter what Adam and I have to endure throughout this situation, we just do not want Ethan to suffer with any type of pain. And this time around with chemo proved to cause him no pain or suffering like it did the first time. NO mouth sores, NO swollen eyes, and NO other negative "surprises"! Thank you for your fervent prayers in that matter, and thank you, Lord for answering those prayers and protecting Ethan from pain/harm.
- Ethan has started spitting up more than usual - he normally doesn't spit up at all. It's always around when he's eating, so he could just be eating more than he really has room for, but be in prayer that it's nothing more serious.
- We recently found out that there is an allotted amount of money that is set aside for the bone marrow search (not the actual transplant, just the "search"), and if the costs of the search should end up being more than the money that is allotted to pay for it, then the difference is owed by the family. The more complicated the search, the more money it costs. Please be in prayer that the cost of the bone marrow search does not exceed the allotted amount that's been established to pay for it.
- Be in prayer for us as we go to Boston this week for our consultation. We're not sure the exact day we're leaving, but they've confirmed it will be this week. We've been advised that we will get A LOT of information during this first visit and that most of it will consist of "worst case scenario" situations in regards to Ethan and the transplant. Ethan will be going with us so they can examine him. This will be a very long day, so please be in prayer that Ethan adjusts well to life in his stroller or our laps for the day. Pray he is not extra irritable so that we can focus on what the doctors tell us, and pray that he's able to sleep and/or be content in the stroller and/or car seat for however long we need him to be.
- Also, in regard to our Boston trip, please pray that Adam and I have the clarity we need to ask all the right questions and gain the much needed understanding of everything that will take place. This may be the one time we have the full attention of the doctors in Boston until transplant, so I want us to take advantage of that in all ways possible.
- Ethan and I go back to the hospital for an Outpatient Visit tomorrow morning. Please pray that his blood counts are good and we are able to come back home - as opposed to being re-admitted. Also pray that Ethan continues to take his medication well while we are at home.
I know this is a lot of information, but I know you are praying and I appreciate you allowing me the opportunity to give specific requests. If you could say a prayer for me as well, I'd be grateful. I'm feeling especially run down lately, and I need to bounce back.
Friday, May 16, 2008
Going Home
We will be going home at some point today (for about 10 days before being re-admitted for another round of chemo), they've not given me a discharge time, but it doesn't matter because I know tonight I will be in my own bed, and Ethan will be in his comfy crib. It's so odd what I find myself getting excited about lately.... I never gave any thought about how my own shower & towels felt, or how my own sheets/pillow feel when I crawl into bed, or how I used to wind down at night to a magazine or television show as I drifted off to sleep, my own kitchen, my own sofa and recliner chair, a mirror in the bathroom!.... each one of those things are basic comforts that I've grown to both miss and appreciate while Ethan and I have to be in the hospital. I never paid so much attention to things like that before, but man am I looking forward to all of them again!
This morning as I was feeding Ethan, a million thoughts were in my head. I started picturing Ethan at various stages of his life (6 years old, 16 years old, in college, out of college, etc...) and I started picturing people meeting him at those particular stages. I started to imagine that there could very well be many times in his life when people bump into him, find out his name and tell him how THEY prayed for him when he was a baby. I imagined someone telling him that his story and situation helped lead one of their friends or family members to the Lord. I imagined that the parents of his future wife could very well be aware of "Baby Ethan" and are right now praying daily for him, only to later find out that he would be the husband of their little girl. All of these things were painted so beautifully in my mind this morning.
I had many other thoughts about all kinds of different things about our situation. I remember when Ethan was first born and the weeks I was home with him before going back to work, I would pray over him - from head to toe - at his middle of the night feedings. I prayed God's protection of his brain, his eyes, his ears, his organs, his legs, his arms.... praying specific details as I went down the areas of his being. I prayed against disease and neurological problems. I prayed as detailed as I thought possible, thinking I had covered every base of my sons body and health in prayer. I had no idea at all that cancer was, at that time, swimming through his blood. I sometimes think, "Lord, why didn't you honor those prayers"... or "Why didn't I pray better, or longer, or even more specifically", or "What was the point in my praying all of that each night if it didn't matter in the end".... And, as we all know, there are no answers (at least right now) to those questions or the hundreds of similar ones that float in and out of my mind. But there are times when you just try to grasp at ANY reasoning, anything at all, to help your mind reconcile that your precious little boy has leukemia. But the truth is he has it. We don't know why. We don't know for how long. And we don't know in all of the ways and areas mine and Adam's lives will be affected by this. As I was rocking Ethan this morning - after having thought about all of this for a while - again, I was reminded this is out of my hands. All of life is really out of our hands. We can make decisions about what we want to major in when we go to college, or what kind of job we want to accept, or even where we want to spend our money... but the core of life is really completely out of our control. No one wants cancer, autism, heartache, pain, lies, tragedy, poverty, confusion etc. in their lives.... but they exist.... and often unexpectedly. So the natural question is - why? Why do these things pop up in our lives and seem to wreck our hopes/dreams/desires? I think the hardest answer that you have to come to terms with is that an answer is not always immediately evident. I don't know why my son was chosen to have infant cancer in the form of a rare leukemia. I don't know why my husband and I have been chosen to endure this trial for the immediate future and for years to come.
But I do believe that one day we will know.
I've not known much tragedy - if any - in my life up to this point, but I have had my share of heartache. There was one particular point in my life that a time of surreal heartache entered quite unexpectedly. While, at the time, it made no sense to me that my world was all of sudden turned upside down... years down the road, everything did make sense. God had a different direction for my life than I understood at the time. And in order to move me into His plan, I had to endure some confusion and pain. I didn't know at the time why everything I didn't want to happen was happening, but in the end, life was truly better than I had originally planned. That's what I believe will happen now with Ethan's situation. I don't know why Ethan has cancer and I never know what our life is going to look like from day to day, but I do know that the God who allowed me to experience pain before, brought me out of it to an even better place. And He will do it again.... He has to. This is my son. This is the life He brought me to. This is the life He wants me to have. This is the life I was created to live. And when the time is right, He will reveal complete joy and understanding... just as He has done before.
I could say so much more this morning. So many more thoughts in my mind... but I'll save them for another day. In the mean time, I will close with another THANK YOU to all of the thousands of people who daily pray for our little man. I could not do this without you. There are many days that I start to pray and... nothing. Nothing can come out of my mouth or my mind because there's just so much.... but in those moments, I am at ease and I allow myself to sleep, because I know you are praying on my behalf. YOU are praying the prayers and pleading with the Lord when I don't have the strength to do so. I cannot thank you enough for that blessing.
Big Hugs being sent your way today.
This morning as I was feeding Ethan, a million thoughts were in my head. I started picturing Ethan at various stages of his life (6 years old, 16 years old, in college, out of college, etc...) and I started picturing people meeting him at those particular stages. I started to imagine that there could very well be many times in his life when people bump into him, find out his name and tell him how THEY prayed for him when he was a baby. I imagined someone telling him that his story and situation helped lead one of their friends or family members to the Lord. I imagined that the parents of his future wife could very well be aware of "Baby Ethan" and are right now praying daily for him, only to later find out that he would be the husband of their little girl. All of these things were painted so beautifully in my mind this morning.
I had many other thoughts about all kinds of different things about our situation. I remember when Ethan was first born and the weeks I was home with him before going back to work, I would pray over him - from head to toe - at his middle of the night feedings. I prayed God's protection of his brain, his eyes, his ears, his organs, his legs, his arms.... praying specific details as I went down the areas of his being. I prayed against disease and neurological problems. I prayed as detailed as I thought possible, thinking I had covered every base of my sons body and health in prayer. I had no idea at all that cancer was, at that time, swimming through his blood. I sometimes think, "Lord, why didn't you honor those prayers"... or "Why didn't I pray better, or longer, or even more specifically", or "What was the point in my praying all of that each night if it didn't matter in the end".... And, as we all know, there are no answers (at least right now) to those questions or the hundreds of similar ones that float in and out of my mind. But there are times when you just try to grasp at ANY reasoning, anything at all, to help your mind reconcile that your precious little boy has leukemia. But the truth is he has it. We don't know why. We don't know for how long. And we don't know in all of the ways and areas mine and Adam's lives will be affected by this. As I was rocking Ethan this morning - after having thought about all of this for a while - again, I was reminded this is out of my hands. All of life is really out of our hands. We can make decisions about what we want to major in when we go to college, or what kind of job we want to accept, or even where we want to spend our money... but the core of life is really completely out of our control. No one wants cancer, autism, heartache, pain, lies, tragedy, poverty, confusion etc. in their lives.... but they exist.... and often unexpectedly. So the natural question is - why? Why do these things pop up in our lives and seem to wreck our hopes/dreams/desires? I think the hardest answer that you have to come to terms with is that an answer is not always immediately evident. I don't know why my son was chosen to have infant cancer in the form of a rare leukemia. I don't know why my husband and I have been chosen to endure this trial for the immediate future and for years to come.
But I do believe that one day we will know.
I've not known much tragedy - if any - in my life up to this point, but I have had my share of heartache. There was one particular point in my life that a time of surreal heartache entered quite unexpectedly. While, at the time, it made no sense to me that my world was all of sudden turned upside down... years down the road, everything did make sense. God had a different direction for my life than I understood at the time. And in order to move me into His plan, I had to endure some confusion and pain. I didn't know at the time why everything I didn't want to happen was happening, but in the end, life was truly better than I had originally planned. That's what I believe will happen now with Ethan's situation. I don't know why Ethan has cancer and I never know what our life is going to look like from day to day, but I do know that the God who allowed me to experience pain before, brought me out of it to an even better place. And He will do it again.... He has to. This is my son. This is the life He brought me to. This is the life He wants me to have. This is the life I was created to live. And when the time is right, He will reveal complete joy and understanding... just as He has done before.
I could say so much more this morning. So many more thoughts in my mind... but I'll save them for another day. In the mean time, I will close with another THANK YOU to all of the thousands of people who daily pray for our little man. I could not do this without you. There are many days that I start to pray and... nothing. Nothing can come out of my mouth or my mind because there's just so much.... but in those moments, I am at ease and I allow myself to sleep, because I know you are praying on my behalf. YOU are praying the prayers and pleading with the Lord when I don't have the strength to do so. I cannot thank you enough for that blessing.
Big Hugs being sent your way today.
Thursday, May 15, 2008
Some Answered Prayers
Answered prayer #1:
As of 3:45 this afternoon, Ethan has not shown any side effects such as he had last time (no sores in his mouth, no swollen eyes) I am THRILLED about that!
Answered prayer #2:
I was able to connect with our case manager in Boston and he told me we will be going next week for our initial consultation. He needs to confirm with the doctor's schedule, but will follow up with me tomorrow morning on the date and time. I'm so happy to have finally established "contact" with someone up there!
Answered prayer #3:
We DO get to go home tomorrow! We will begin his Accutane medication and antibiotic by mouth while we are at home (be in prayer all of that goes smoothly once again), but I don't mind doing whatever we need to do since we will be in the comforts of our own home!
Ethan's bottom is still a little raw, but he doesn't seem to be in pain. I can tell when I change his diaper and have to thoroughly clean the area, he doesn't flinch a bit! Thank you, Lord! It still needs healing, but I'm so glad he doesn't appear to hurting from it. Pray also that his stools start to be a little more solid... they are still a bit loose and frequent. Pray that his immune system doesn't pick up any infections, and that we're able to be problem-free during our time at home.
He is sooo cute and active! He loves rolling all the time now and even when you're trying to change his diaper! He smiles at everyone, and only cries when he's hungry/needs a burp, bored or tired - just like a typical baby. It is such a blessing to be with him all day and see his personality continue to form, and THAT is the silver-lining in the midst of such a storm.
I also wanted to mention that I've now met 2 moms who both have sons that were diagnosed with JMML and though each of their journey's were different (one was particularly hard, with a 6 month hospital stay at one point!), their boys are in remission today and continue to be strong. Thank you, Lord for the encouragement of these situations and for bringing these ladies into my life... thank you for the healing in their boys... and for your continued work in Ethan's life.
As of 3:45 this afternoon, Ethan has not shown any side effects such as he had last time (no sores in his mouth, no swollen eyes) I am THRILLED about that!
Answered prayer #2:
I was able to connect with our case manager in Boston and he told me we will be going next week for our initial consultation. He needs to confirm with the doctor's schedule, but will follow up with me tomorrow morning on the date and time. I'm so happy to have finally established "contact" with someone up there!
Answered prayer #3:
We DO get to go home tomorrow! We will begin his Accutane medication and antibiotic by mouth while we are at home (be in prayer all of that goes smoothly once again), but I don't mind doing whatever we need to do since we will be in the comforts of our own home!
Ethan's bottom is still a little raw, but he doesn't seem to be in pain. I can tell when I change his diaper and have to thoroughly clean the area, he doesn't flinch a bit! Thank you, Lord! It still needs healing, but I'm so glad he doesn't appear to hurting from it. Pray also that his stools start to be a little more solid... they are still a bit loose and frequent. Pray that his immune system doesn't pick up any infections, and that we're able to be problem-free during our time at home.
He is sooo cute and active! He loves rolling all the time now and even when you're trying to change his diaper! He smiles at everyone, and only cries when he's hungry/needs a burp, bored or tired - just like a typical baby. It is such a blessing to be with him all day and see his personality continue to form, and THAT is the silver-lining in the midst of such a storm.
I also wanted to mention that I've now met 2 moms who both have sons that were diagnosed with JMML and though each of their journey's were different (one was particularly hard, with a 6 month hospital stay at one point!), their boys are in remission today and continue to be strong. Thank you, Lord for the encouragement of these situations and for bringing these ladies into my life... thank you for the healing in their boys... and for your continued work in Ethan's life.
Wednesday, May 14, 2008
Pictures
I thought I'd update the site with some pics I took of Ethan last week while we were at home. The two with him in his stroller are when we took a walk outside for some fresh air. I'm looking forward to taking more when we go home again this weekend! I can't believe he will be 4 months old next week (Friday!).
I'm so glad the chemo is finished as of this morning. Our little trooper needs a break from the toxic medication... he's been on it 24/7 for the past 6 days, and I can tell he's a little run-down today. That is to be expected, but I'm just happy he's going to be getting a break for a couple of weeks. His little bottom is still hurting, but we now watch to see if any other side effects surface. As soon as everyone feels comfortable he's in the clear, then we can go home and start the "at home" meds and treatment that we had been doing last week. Since the effects of chemo really hit the immune system about a week after the chemo has stopped (meaning the immune system is at its absolute weakest and unable to fight off even the most simple infection), we need to be extra careful with him while we're at home. Be in prayer that Adam and I remain healthy and that Ethan doesn't get a fever or infection of any kind.
Thanking God for you daily....
Tuesday, May 13, 2008
Last day of chemo for this round
Today Ethan will get his final bag of chemo for this round/session. Then he will be observed a few days for possible side effects. One side effect has already surfaced... "fissures" (tears) around his rectum. I noticed blood in his diaper when I was changing him yesterday and we weren't sure if it was an intestinal problem or not... but then the doctor looked a little deeper and saw about 3 tears in the inner area that were causing the bleeding. We have to take several extra steps when changing his diaper to cleanse and treat the painful area. Be in prayer for his little bottom to be healed and that he won't get an infection from any bacteria getting stuck in there. His eyes haven't shown signs of swelling (yay!), so continue to pray that they don't. And he isn't showing any mouth sores (which is great!), so continue to pray for that as well. The hospital staff has continued to be so great to us and to Ethan. I'm so appreciative of all of the nurses and the doctors. They really care about our cutie and I'm so thankful for them. But, I'm really looking forward to going back home for a few days, so hopefully there are no hiccups with that. We still haven't heard from Boston about our consultation appointment, so one of the docs here is going to reach out to them to try and "light a fire". I'll close today's post with a poem that was sent to us via email. And as always, thank you so much for your prayers for us and for Ethan. We love you all.
Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate...
and the Master so gently said,"Wait."
"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!"
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.
My future and all to which I relate
hangs in the balance and you tell me to Wait?"
I'm needing a 'yes', a go-ahead sign.
Or even a 'no,' to which I'll resign.
You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
Lord, I've been asking, and this is my cry:
I'm weary of asking! I need a reply.
Then quietly, softly, I learned of my fate
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
and grumbled to God, "So, I'm waiting...for what?"
He seemed then to kneel, and His eyes met with mine...
And He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.
I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of My love for each saint.
You'd not know the power that I give to the faint.
You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.
You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.
The glow of My comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.
You'd never know should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But oh, the loss if I lost what I'm doing in you.
So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still "WAIT".
- by Russell Kelfer (thank you, Jen)
Monday, May 12, 2008
Emotional Cleansing
Over the last couple of days I had been in quite a mood. This spirit of defeat had descended upon me and had consumed every single part of my being. I was numb, callous, irritated and jaded. To say I was feeling sorry for myself would be putting it mildly. It was as if I had let any type of love, comfort, encouragement or joy escape me. I felt nothing. Except cold and closed off on the inside. I was once again overwhelmed with all that was happening and will happen in our lives... growing more and more cold-hearted and irritated. I wanted to shake it off, and I even talked to Adam several times about what I was feeling and how I couldn't get rid of it. I was like this for a few days. Closed off to any emotion. I wasn't even "feeling" the negativity that was in my being, it was just something that I had accepted and was living it out daily. I had given into a mother's worst fear. I had given into self-pity. I had given into complete defeat and didn't want to "go through the motions" when my defeated outlook made me believe my son wouldn't make it in the end. I just didn't want to do any of this anymore because I had allowed myself to believe any and every lie that the devil, (the "hunter") himself was throwing at me. It was as if at one point the "shield of truth" that I had fervently held up for protection had fallen, and I didn't bother picking it back up. Instead I allowed the "arrows of lies" to come right at me and pierce me wherever they chose. The first arrow came slowly but steadily. The hunter shot it up high into the air, and it took it's time coming down and eased its way into my faith. I should have reached for my shield, but I didn't. He delayed the next of his arrows, allowing my weakened faith to slowly shatter, but then he released the rest of them and they came faster and faster... and then all at once until I was on the verge of spiritual and emotional death. He went for my faith first, then my joy, then my hope, then my peace... until there was nothing good left in me. If you can imagine a sort of medieval soldier laying there with arrows and swords sticking out of him, left to die. That was me. Not physically of course, but mentally, spiritually, and emotionally... It had appeared the hunter had won the battle... and for a while I was content to let him. I had, in most respects, given up.
And then the Lord said NO.
I received a card in the mail last night that woke me up from my catatonic state. That was the first arrow that the Lord removed. He used that encouragement to bandage up the smaller wounds first. But I was in need of more help. The arrows of lies had penetrated very deep and needed to be tenderly and carefully removed. But who better than the Creator of Life to do the "surgical" work. The rest of my healing came yesterday morning - Mother's Day. Adam and I both went to church together for the first time in over a month. My parents came to the hospital to stay with Ethan to allow Adam to take me out for Mother's Day. As we were driving to church, I quietly asked the Lord to talk to me and to touch me. I repeated that to myself several times over. And He did. I felt as if our pastor's message was specifically for me. I'm sure others felt that way, too... but the Lord was talking to me. He was touching each wound I had acquired and was healing it with each word that our pastor spoke. The tears started to fall down my cheek within the first 5 minutes of the sermon. I was slowly releasing the pain. I tried to dry the tears since I was sitting in church! But they kept coming. They needed to come. By the end of the sermon, our pastor called for anyone who needed to cry out their hearts before God, to come to the altar and do so. I felt compelled to go. I did go. And I wept. I hadn't wept since we found out about Ethan's diagnosis. I have cried... but not truly wept. But I did. And with each tear God was bandaging up another wound, then another, then another... until He had taken all of the lies and breathed new life into my being. Yet He didn't stop there. When we got back to the hospital I had a very comforting email from the lady (Debby) whose son (Parker) had and was cured from JMML. Her words brought me the extra peace and reinforced hope I was needing. Throughout the day, God had spoken to every area in my being that had been damaged. What a time of personal healing for me... and on Mother's day of all days.
I know it will take some time for the bandages to be ready to come off and for my full strength to return, but I cherish the reminder that my Lord is on my side. And though small battles appear to be lost in weakness sometimes, He will not allow the hunter to destroy me... or Ethan.
The victory is His... and the victory is mine.
_________________________________
And then the Lord said NO.
I received a card in the mail last night that woke me up from my catatonic state. That was the first arrow that the Lord removed. He used that encouragement to bandage up the smaller wounds first. But I was in need of more help. The arrows of lies had penetrated very deep and needed to be tenderly and carefully removed. But who better than the Creator of Life to do the "surgical" work. The rest of my healing came yesterday morning - Mother's Day. Adam and I both went to church together for the first time in over a month. My parents came to the hospital to stay with Ethan to allow Adam to take me out for Mother's Day. As we were driving to church, I quietly asked the Lord to talk to me and to touch me. I repeated that to myself several times over. And He did. I felt as if our pastor's message was specifically for me. I'm sure others felt that way, too... but the Lord was talking to me. He was touching each wound I had acquired and was healing it with each word that our pastor spoke. The tears started to fall down my cheek within the first 5 minutes of the sermon. I was slowly releasing the pain. I tried to dry the tears since I was sitting in church! But they kept coming. They needed to come. By the end of the sermon, our pastor called for anyone who needed to cry out their hearts before God, to come to the altar and do so. I felt compelled to go. I did go. And I wept. I hadn't wept since we found out about Ethan's diagnosis. I have cried... but not truly wept. But I did. And with each tear God was bandaging up another wound, then another, then another... until He had taken all of the lies and breathed new life into my being. Yet He didn't stop there. When we got back to the hospital I had a very comforting email from the lady (Debby) whose son (Parker) had and was cured from JMML. Her words brought me the extra peace and reinforced hope I was needing. Throughout the day, God had spoken to every area in my being that had been damaged. What a time of personal healing for me... and on Mother's day of all days.
I know it will take some time for the bandages to be ready to come off and for my full strength to return, but I cherish the reminder that my Lord is on my side. And though small battles appear to be lost in weakness sometimes, He will not allow the hunter to destroy me... or Ethan.
The victory is His... and the victory is mine.
_________________________________
Ethan is still on chemo for a few more days. We've not noticed any side effects, but continue to be in prayer about that. Also be in prayer that he responds well and we can go back home next weekend for a few more days. We've not heard from Boston yet for a consultation, so that's a continued prayer request as well.
To EBC - it was wonderful to spend the morning with you yesterday. Thank you for letting me weep and for praying for me as I did. Thank you also for the hugs, the encouragement, the smiles, the cards and the gifts you gave. Your thoughtfulness was so touching. Thank you to my friends and family who sent me messages, emails and cards. And thank you to my husband, my parents, Kari/Jason, and my in-laws for my special gifts. All of you helped make my first Mother's Day completely wonderful... in so many ways.
))
p.s. - Throughout this journey with Ethan I have found other babies that are also in need of prayer. I've posted links to their websites on the right hand corner of my site under the pictures.
Saturday, May 10, 2008
To Ethan, Love Mommy
To my dear son,
The day I met your dad, I found the beginning
of my purpose in life.
Oh the joy and fun of being his wife!
I was fine and content to be in that role for a while,
Because our life held so many reasons to smile.
But a few years down the road,
We found out our story wasn't quite finished being told.
Our perfect little two, was soon to become three
All because of you.
A wife I knew how to do and how to be,
But thoughts of being a mom seemed
Oh the joy and fun of being his wife!
I was fine and content to be in that role for a while,
Because our life held so many reasons to smile.
But a few years down the road,
We found out our story wasn't quite finished being told.
Our perfect little two, was soon to become three
All because of you.
A wife I knew how to do and how to be,
But thoughts of being a mom seemed
a surreal journey for me.
You were here in what feels like an eye's blink,
And I was amazed at how easily I didn't have to think.
Right away, each of your needs I knew how to meet.
And, as proof you are your daddy's son,
you swept me off my feet.
On this my first Mother's Day,
I've not much else than this to say...
Ethan, you've made me a mom
And, it's an honor I'll cherish each day life goes on.
On this my first Mother's Day,
I've not much else than this to say...
Ethan, you've made me a mom
And, it's an honor I'll cherish each day life goes on.
I love you,
Mommy
Friday, May 9, 2008
I love sleep
Since we had been home from the hospital, Ethan started sleeping through the night (and it was wonderful!). I had gotten so used to the good sleep I was getting, that I was nervous that the nice little pattern we'd established might change once we were readmitted to the hospital. The nurse has to change his diaper every 2 hours while he's on chemo, to avoid burns, and his blood pressure/temperature are also checked throughout the night.... so I was so anxious about the fact that he'd wake up and not sleep due to all the interruptions. So, that was my private prayer to the Lord and I must let you know that Ethan slept perfectly last night. He did wake up and smile at the nurse when she changed him (she told me this morning), but he would go right back to sleep. How wonderful! Thank you, Lord, for the small blessings. I pray that continues the whole time we are here. I'm a MUCH better person when I've had some rest!
Ethan seems to be fine so far on the chemo. He's still active and has a good appetite. Continue to pray that the toxins from the chemo do not harm Ethan's body, but that it only does good things as far as killing the cancer cells and shrinking his spleen. And pray that his has no painful side effects.
Adam and I found out yesterday that when we go to Boston for our initial consultation they will tell us all the details of the bone marrow transplant.... progress they've made in finding donor matches, how long Ethan and I will be in Boston, the degrees of isolation we will have to continue to endure post-transplant, etc. Be in prayer for that meeting. It will be an all day event, and Ethan will need to be with us (for his initial exam). Begin to pray that Ethan isn't irritable or fussy that day, because he will be confined to his stroller or car seat for most of the time. But we first need the appointment. We're waiting for Boston to call us at any time, so we're praying that happens soon so we can know how to plan our immediate future.
I want to say something else here. All along I've said that I don't want to limit how God chooses to heal Ethan, but at the same time, I've been asking for prayer for a bone marrow match (since statistically, that is the only chance of cure). But I've been thinking lately that I shouldn't get discouraged if they don't find a match for Ethan or if it comes out that Ethan's body/situation makes him not a good candidate for a match. I've been asking for an obvious miracle, and God can certainly heal Ethan without the transplant. Of course, the odds that just chemo can rid Ethan of this disease are extremely low... but God doesn't follow statistical odds or facts. And though I am hoping for a transplant match and a cure for Ethan. I just want to be careful in my own mind that I don't put limits on what God can do. And I don't want to lose faith or hope in healing just because something may initially look discouraging. I don't know why but that thought process has just been on my mind lately. I pray the Lord will heal Ethan however He chooses to, and that He allows us the grace and strength to see any hiccups in the "plan" as His doing because He has a better way.
I've been in contact with that woman (Debby) in Alabama who's son (Parker) had and was cured from JMML. What an encouragement her words have been. I want to write more about what God has revealed to me through her, but I'll save that for another time. I'm still letting it all sink in.
We love you all. All who pray for and care about our family. Whether we've ever met or not. Whether we've been friends for years or for minutes, you're an intimate part of this family. We are beyond thankful for you and love you with a love that binds all of us to Christ... and to Ethan.
Thank you for that treasure.
Ethan seems to be fine so far on the chemo. He's still active and has a good appetite. Continue to pray that the toxins from the chemo do not harm Ethan's body, but that it only does good things as far as killing the cancer cells and shrinking his spleen. And pray that his has no painful side effects.
Adam and I found out yesterday that when we go to Boston for our initial consultation they will tell us all the details of the bone marrow transplant.... progress they've made in finding donor matches, how long Ethan and I will be in Boston, the degrees of isolation we will have to continue to endure post-transplant, etc. Be in prayer for that meeting. It will be an all day event, and Ethan will need to be with us (for his initial exam). Begin to pray that Ethan isn't irritable or fussy that day, because he will be confined to his stroller or car seat for most of the time. But we first need the appointment. We're waiting for Boston to call us at any time, so we're praying that happens soon so we can know how to plan our immediate future.
I want to say something else here. All along I've said that I don't want to limit how God chooses to heal Ethan, but at the same time, I've been asking for prayer for a bone marrow match (since statistically, that is the only chance of cure). But I've been thinking lately that I shouldn't get discouraged if they don't find a match for Ethan or if it comes out that Ethan's body/situation makes him not a good candidate for a match. I've been asking for an obvious miracle, and God can certainly heal Ethan without the transplant. Of course, the odds that just chemo can rid Ethan of this disease are extremely low... but God doesn't follow statistical odds or facts. And though I am hoping for a transplant match and a cure for Ethan. I just want to be careful in my own mind that I don't put limits on what God can do. And I don't want to lose faith or hope in healing just because something may initially look discouraging. I don't know why but that thought process has just been on my mind lately. I pray the Lord will heal Ethan however He chooses to, and that He allows us the grace and strength to see any hiccups in the "plan" as His doing because He has a better way.
I've been in contact with that woman (Debby) in Alabama who's son (Parker) had and was cured from JMML. What an encouragement her words have been. I want to write more about what God has revealed to me through her, but I'll save that for another time. I'm still letting it all sink in.
We love you all. All who pray for and care about our family. Whether we've ever met or not. Whether we've been friends for years or for minutes, you're an intimate part of this family. We are beyond thankful for you and love you with a love that binds all of us to Christ... and to Ethan.
Thank you for that treasure.
Thursday, May 8, 2008
On a roll
Well, we're back in the hospital now. And oddly enough, it feels comforting to be back in a familiar place. Of course, I have LOVED being at home. But being here at the hospital again has a comfortable feel about it. I know the nurses and doctors and they know Ethan. I know the "lay of the land" and feel more prepared this time around. Ethan's good blood cell counts have dropped and his spleen is slightly bigger than it was before, but nothing that the doctor didn't expect. He will start his round of IV chemo later today and will be on it continuously for 6 days. If all goes well, we'd be able to go home shortly after that to continue his other medication by mouth. Pray he will be "side effect" free!
I was thinking today how thankful I am that God is guiding every step of this process. He brought us here to these doctors and have guided them in the best ways for Ethan. I am also very happy with this children's hospital and very thankful that they care so much about us and Ethan. And more importantly, I'm thankful that Ethan is under the Lord's care. I found out today that overall Ethan has responded better than all of the pediatric oncology specialists thought he would. Because JMML doesn't have a lot of concrete evidence or specific treatment procedures, a lot of the treatment is somewhat experimental. I mean, they do know what general steps to take, but the specific direction a doctor chooses is sometimes up to his own best judgement simply because there's not enough data to pull from. And so far, the path of treatment they've chosen for Ethan has responded well. Continue to pray for that! And for the Lord's wisdom to be with Ethan's doctors.
On a side note, I want to share some "mommy fun" with you! You might be wondering why I chose "on a roll" for this post's title. Well... Ethan rolled over for the first time last night! The first time was on the floor in the living room. Adam, Ethan and I were watching TV and Ethan started moving toward his side... after a few minutes his whole bottom half had turned over but he struggled with his head and one of his arms. It was adorable and we were excited to see him having fun with "the fight". THEN, this morning when he woke up, I went to get him and he was completely on his tummy! We always put him to sleep on his back... and this morning he had turned his head all the way down to where his feet were when I laid him down, AND he had rolled over all the way!! I was so excited that I had to take pictures!
The "before" shot I took after the fact, just so you'd have a point of reference. But, the "after" is how I found him this morning. What a joy to have his first roll at home and at only 3 1/2 month old!
I was thinking today how thankful I am that God is guiding every step of this process. He brought us here to these doctors and have guided them in the best ways for Ethan. I am also very happy with this children's hospital and very thankful that they care so much about us and Ethan. And more importantly, I'm thankful that Ethan is under the Lord's care. I found out today that overall Ethan has responded better than all of the pediatric oncology specialists thought he would. Because JMML doesn't have a lot of concrete evidence or specific treatment procedures, a lot of the treatment is somewhat experimental. I mean, they do know what general steps to take, but the specific direction a doctor chooses is sometimes up to his own best judgement simply because there's not enough data to pull from. And so far, the path of treatment they've chosen for Ethan has responded well. Continue to pray for that! And for the Lord's wisdom to be with Ethan's doctors.
On a side note, I want to share some "mommy fun" with you! You might be wondering why I chose "on a roll" for this post's title. Well... Ethan rolled over for the first time last night! The first time was on the floor in the living room. Adam, Ethan and I were watching TV and Ethan started moving toward his side... after a few minutes his whole bottom half had turned over but he struggled with his head and one of his arms. It was adorable and we were excited to see him having fun with "the fight". THEN, this morning when he woke up, I went to get him and he was completely on his tummy! We always put him to sleep on his back... and this morning he had turned his head all the way down to where his feet were when I laid him down, AND he had rolled over all the way!! I was so excited that I had to take pictures!
The "before" shot I took after the fact, just so you'd have a point of reference. But, the "after" is how I found him this morning. What a joy to have his first roll at home and at only 3 1/2 month old!
Before...
After... 
Wednesday, May 7, 2008
Back to the hospital
I received a very wonderful email that informed me that registering with the National Bone Marrow Registry is free for the two weeks around Mother's Day. For those of you who have expressed a general interest in wanting to get added to the Donor Bank, I've included the link with the information.
http://www.marrow.org/HELP/Events/Thanks_Mom/index.html?src=ThxMGarden413500
Also, I have a three updated prayer requests:
1. Ethan will be re-admitted to the hospital tomorrow (Thursday) to start his IV chemo again. He had some painful side effects the last time (mouth/esophagus/rectal sores and swollen eyes), so they are stretching the chemo over 6 days as opposed to 4. Please be in prayer that the chemo will do what it needs to do with Ethan's blood cells and that it will help to shrink his spleen (we want to avoid having to take his spleen out). Please also pray that the side effects will not be as painful for him this time - or as scary for mom and dad!
2. Continue to pray for a bone marrow match to be found quickly (the search is currently underway).
3. Boston Children's hospital has received Ethan's case file from our hospital in Connecticut. Please be in prayer that they call us very soon for an initial consultation to discuss the details of everything that will take place when the bone marrow transplant is ready.
http://www.marrow.org/HELP/Events/Thanks_Mom/index.html?src=ThxMGarden413500
Also, I have a three updated prayer requests:
1. Ethan will be re-admitted to the hospital tomorrow (Thursday) to start his IV chemo again. He had some painful side effects the last time (mouth/esophagus/rectal sores and swollen eyes), so they are stretching the chemo over 6 days as opposed to 4. Please be in prayer that the chemo will do what it needs to do with Ethan's blood cells and that it will help to shrink his spleen (we want to avoid having to take his spleen out). Please also pray that the side effects will not be as painful for him this time - or as scary for mom and dad!
2. Continue to pray for a bone marrow match to be found quickly (the search is currently underway).
3. Boston Children's hospital has received Ethan's case file from our hospital in Connecticut. Please be in prayer that they call us very soon for an initial consultation to discuss the details of everything that will take place when the bone marrow transplant is ready.
And finally, I found out about a family who had a son that was diagnosed with JMML (same as Ethan) and was so encouraged due to how rare it is. They experienced a miracle with their son, just as we are praying for Ethan. I wanted to share their website with you as I was encouraged while reading it this morning. Click on "My Story" when you get on the site.
http://www.caringbridge.org/visit/parkerobarr
Daily thanking God for each of you....
Tuesday, May 6, 2008
Jehovah-Jireh
As I was feeding Ethan this morning and mindlessly watching the news, I completely remembered a situation that happened many months ago - while I was pregnant with Ethan. There was one night at church that I happened to stumble upon the story of Abraham and Isaac. I don't believe that's what the message was about, however, in my attempt to turn to the passage the preacher was preaching, I happened to stop at the story of Isaac. I knew the story quite well, but was intrigued all over again. I even leaned over to Adam and told him we should name Ethan, Isaac instead. I felt a strange feeling that I was linked to that story in a way I'd never felt before. I really and sincerely felt like I needed to name Ethan, Isaac. Not one to like change, my husband thought that Ethan was a perfectly good name and had already bonded with it for our son. I had as well, but for some reason I was sincerely drawn to Isaac in the Bible. Although my thoughts around Isaac and the baby I was carrying were very strong and strange, after that night, I never really gave it much thought.
Until this morning.
I've said before that I do not believe in coincidence. I now believe that God put Abraham and Isaac on my heart many months before we'd be (in a sense) living out that very trial that Abraham faced... the possibility that his one and only son would be taken from him... so that in this very moment, I'd recall the occurrence and be both encouraged and challenged.
Until this morning.
I've said before that I do not believe in coincidence. I now believe that God put Abraham and Isaac on my heart many months before we'd be (in a sense) living out that very trial that Abraham faced... the possibility that his one and only son would be taken from him... so that in this very moment, I'd recall the occurrence and be both encouraged and challenged.
__________________________
"And it came to pass after these things, that God did tempt Abraham, and said unto him, Abraham: and he said, Behold, here I am. And he said, Take now thy son, thine only son Isaac, whom thou lovest, and get thee into the land of Moriah; and offer him there for a burnt offering upon one of the mountains which I will tell thee of. And Abraham rose up early in the morning... and took two of his young men with him, and Isaac his son, and clave the wood for the burnt offering, and rose up, and went unto the place of which God had told him. Then on the third day Abraham lifted up his eyes, and saw the place afar off. And Abraham said unto his young men, Abide ye here... and I and the lad will go yonder and worship, and come again to you. And Abraham took the wood of the burnt offering, and laid it upon Isaac his son; and he took the fire in his hand, and a knife; and they went both of them together. And Isaac spake unto Abraham his father, and said, My father: and he said, Here am I, my son. And he said, Behold the fire and the wood: but where is the lamb for a burnt offering? And Abraham said, My son, God will provide himself a lamb for a burnt offering: so they went both of them together. And they came to the place which God had told him of; and Abraham built an altar there, and laid the wood in order, and bound Isaac his son, and laid him on the altar upon the wood. And Abraham stretched forth his hand, and took the knife to slay his son. And the angel of the LORD called unto him out of heaven, and said, Abraham, Abraham: and he said, Here am I. And he said, Lay not thine hand upon the lad, neither do thou any thing unto him: for now I know that thou fearest God, seeing thou hast not withheld thy son, thine only son from me. And Abraham lifted up his eyes, and looked, and behold behind him a ram caught in a thicket by his horns: and Abraham went and took the ram, and offered him up for a burnt offering in the stead of his son. And Abraham called the name of that place Jehovah-Jireh: as it is said to this day, In the mount of the LORD it shall be seen. And the angel of the LORD called unto Abraham out of heaven the second time, And said, By myself have I sworn, saith the LORD, for because thou hast done this thing, and hast not withheld thy son, thine only son: That in blessing I will bless thee..." Genesis 22:1-17
_____________________________
All throughout this process, I've been very eager to know what the purpose is... and careful not to miss it. I've wondered what the Lord might have me to gain from this experience and whether or not I was paying attention to whatever He might be trying to tell/teach me. As I recalled the story of Abraham and Isaac this morning, I realized a significant difference between Abraham and myself. Abraham was willing to give his son back to God. I'm quite sure (from the perspective I now have as a parent) that Abraham was not at all looking forward to having to let go of his son. His only son. I'm sure his thoughts wandered all over the place and possibly even questioned "why" to himself. But according to the passage above, he didn't argue back with God. He accepted God's command and was intending to follow through, BUT at the same time believed that God was not going to ignore his faith and obedience.
ooooooooo
That's the difference between Abraham and myself. I've not released Ethan back into God's hands... whatever His will may be. Yes, I've given Ethan into His healing hands and have pleaded for a miracle, but I've withheld Ethan from the Lord in other ways. I've not wanted to truly mentally comprehend that Ethan's life may not be meant to serve the purposes and dreams that I had planned. My son's life has already held such purpose and meaning and he's only 15 weeks old. He has already touched more lives than most of us are able to do in a lifetime. I'm in such awe of that and so honored that I was chosen to be his mom. But, I've been hesitant to let go. I've been hesitant to give him back to God for whatever God has planned. I've not been able to bear the thought of not seeing him grow up. I've not been able to bear the idea that we might enter the dreaded situation in which parents have to bury their own child - when you always assume it will be the other way around. I've not been able to let go and let God - in every area of this situation. And today, I know that's what the Lord is asking of me. He asked it of Abraham. He asked it of Himself when he gave Jesus to the world. And He's asking it of me. Don't misunderstand... I'm not saying that God has "revealed" to me that Ethan won't live a long life here on earth. What I am saying, is that God has shown me the need to hand over everything to Him. My hopes for Ethan's life, my dreams for him... everything. And to trust Him with it all. That's what Abraham did, and he was in the same situation back then as Adam and I are in today... the need to have complete faith and trust that God's plan is out of love for us. Complete faith and trust that God rewards those who obey Him, love Him and believe in Him.
0000000
Lord, you know that we are praying for a lifetime full of memories with Ethan. You know the desires of our hearts in that way. And you know how hard it is for me to let go of the ideas of those things. And though I know you have given me nothing but hope for Ethan's survival, I also know that you're asking me to surrender to Your will no matter what. That is so hard for me as even now I have a tear-stained face. But I do. Just as many mothers before me have done, and many mothers after me will do. I give you my son. My beautiful boy is Yours. He's always been Yours. But I need to acknowledge that before You... and I do that now. You know how hard this is for me, but I know that nothing is too hard for You. That's why I continue to ask that you spare my son, just as you did Isaac. I trust you. I trust your decisions. I trust your plan. And I know that Your grace, Your provision, Your strength, Your joy and Your favor will be ours regardless. Thank You, Lord. Thank you for holding us all so tightly in Your hands. Amen.
I chose "Jehovah-Jireh" as the title of today's post, as it is another one of God's names. It means "the Lord will see and the Lord will provide".
See and provide, Lord. See and provide.
Monday, May 5, 2008
Miracles do happen
"And one of the multitude answered and said, Master, I have brought unto thee my son... And he [Jesus] asked his [the boy's] father, How long is it ago since this came unto him? And he said, Of a child... If thou canst do any thing, have compassion on us, and help us. Jesus said unto him, If thou canst believe, all things are possible to him that believeth. And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief. But Jesus took him [the son] by the hand, and lifted him up; and he arose. And when he [Jesus] was come into the house, ....he said unto them, This kind can come forth by nothing, but by prayer and fasting". - Mark 9:17, 21-24, 27-29After a mental battle on Friday.... I stumbled across this story online. Of all the stories there were on the particular website I was on (http://www.benotafraid.net/), THIS was the story I happened to click on (see below link). THIS is what God wanted me to read. I couldn't stop crying after reading it. To say it renewed my faith would be an understatement.
We continue to be overwhelmed and touched by your
kindness in words, deeds and prayers.
Thank you so very much!
Friday, May 2, 2008
No Fear
Wasn't that the slogan of Nike or Reebok or some sort of logo at one time? No Fear. I don't think there is anything much harder in a person's life than trying to live with "no fear". I can't seem to make it one day... maybe not even a couple of hours... without fear of SOMETHING creeping in. And I'm assuming it's a struggle for most people because how many times does Jesus say in the Bible "Have no fear..." "Fear not"... "Be not afraid"... and so on. It's apparently something we're not meant to do. But we do it. We almost can't help ourselves. NO FEAR is a wonderful concept (and even a command), but I've not been able to master it. Especially not today.
As I waited in the pediatric oncology waiting room this morning for Ethan's appointment, I saw another family that was also waiting there. I didn't see a child with them, so I assumed she was already in the back being seen by a doctor. Ethan began to stir, so I took him out of his car seat and began to feed him. As he was casually taking his bottle, my eyes kept wandering over to the two ladies who were waiting. They were expression-less. They looked off into the distance with such an empty look on their faces. They'd occasionally say something to each other, but the lack of expression never changed. It was as if the wind had been knocked out of them and they were trying to mentally and physically re-group, but couldn't. I knew that feeling. I sat there and watched them, and I understood exactly what they were feeling and thinking without even asking or listening to them. I knew.
Within a few minutes, a young girl walked out of the office with her parents. They all walked over to the two ladies I had been watching. The parents of the girl looked exactly as the two ladies did. The four of them sat there, while the girl (I'm assuming about 10 years old) played. No one said anything to each other. They didn't have to. Their bodies and faces said everything. My daughter/niece has cancer...why us... why her. That's what they were saying without saying it. I'm sure that's what they were trying to comprehend, and yet feeling overwhelmed because they couldn't comprehend it. I understood. I completely understood. I felt an anger I hadn't yet felt throughout this process. Picture a pot of water on a hot stove. You know the bubbles that start to build up just below the surface of the water, right before it starts to boil? That's how I felt. And I couldn't stop it. No matter how much I wanted to turn off "the stove", the water in my being continued to simmer vigorously.... As a tear started to swell up in my eyes, I realized that I had let the bottle slip out of Ethan's mouth. As I repositioned him, the nurse called Ethan's name. As I picked up Ethan and my bag, the nurse grabbed his car seat. She was extremely pleasant, which was very nice, because I was looking for any reason to stay in my bad mood... and an unfriendly nurse would have helped me justify being rude. Of course, I wasn't rude. I smiled right back to her and carried on a conversation as if nothing was wrong while she took Ethan's blood from the tubes in his chest. But when she left... I realized the slow simmering thoughts were still there.
My son has cancer.
I just kept saying it over and over in my mind.... with different emphasis on each word every time I repeated.
MY son has cancer.
My SON has cancer.
My son HAS cancer.
My son has CANCER!
And not just any cancer. One of the worst kinds. The kind that even the best of specialists all over the country haven't seen very much of. The kind that has so much conflicting information out there that there really is no definitive solution/cure/treatment because not enough research has been done due to its being so rare! Before I could let out a scream, Ethan started crying. He needed to burp. As I was burping him, the nurse came back. We were free to go, and she'd call me later today with the results of his blood counts. She was beyond friendly. Probably the nicest nurse (person!) I'd ever met. Ethan kept smiling at her. She kept commenting on how handsome he was and how precious his smile was. I had to agree with her. She commented on his big blue eyes... I said, he gets them from his dad. She asked to hold him, and then commented on how cuddly he was. I had to agree again. He is a very lovable baby. She calmed me down... I'm a master at facades, so I assure you she didn't know I needed it. But I did. I needed to be rescued from the simmering water in which I was slowly starting to drown.
As we left the hospital, I started thinking about fear. Fear is a mental death trap. My thoughts strayed from the fear of the possibility that Ethan's treatment might not be successful to the fear of the possibility that what if he did go into remission one day, only to have the cancer return when he was 3, 10, 16, 21, or even 35 years old. I don't want him taken away from us now, let alone in a few years.
It all started last night... I knew I shouldn't have started to "learn" more about JMML. I have purposefully not read the information that the hospital gave us about childhood leukemia. And I had purposefully not "googled" JMML specifically. Until last night... and let me tell you that nothing I read was helpful, insightful, or encouraging. Nope. Everything I read kept sinking me lower and lower into a pit of despair. Now remember, I said that everything out there about JMML contradicts something else that's out there about JMML. And, of course, I happened to stumble upon all of the depressing facts of just how untreatable and severe a JMML diagnosis really is. Thus the reasoning behind my sorrow today.
Fear. It is crippling. And even now, as I try to overcome my fears with faith and trust that the Lord's going to answer my (our!) prayers.... I'm stuck. I know there are many people out there who pray for a miracle or healing in their loved ones. And I'm quite sure that they pray, believing in complete faith that it will happen... but sometimes, it doesn't. How do you reconcile the fear of not getting the answer you hope for, with trying to have the faith that you will? It's a puzzling back and forth of the mind.
All I can come to grips with is the answer that my very wise husband gave me last night. We can have faith that God is going to take care of us regardless of what takes place in our lives... and we can pray.
Several times in the Bible, it appears that God had his mind set on something, and then changed it because of prayer (2 Kings 20:1-5, Genesis 18:26-33). I don't know the will of God in Ethan's life. I don't know the will of God in mine and Adam's lives. But I do know that I can pray. I can cry out to the Lord that mine and your prayers for a miracle healing be answered. Not just until Ethan is 8, 18, 38 or 58... but healed wholly and completely of this disease. That he may have a long and blessed life here on earth.
It's hard... but I can't give up that hope. Please don't give up either. Keep praying. I've never felt so connected to a body of believers as I have over the last several weeks. Together we are a united front before the throne of God... collectively kneeling and asking for the same thing.
Heal my baby boy.... Heal my baby boy.
As I waited in the pediatric oncology waiting room this morning for Ethan's appointment, I saw another family that was also waiting there. I didn't see a child with them, so I assumed she was already in the back being seen by a doctor. Ethan began to stir, so I took him out of his car seat and began to feed him. As he was casually taking his bottle, my eyes kept wandering over to the two ladies who were waiting. They were expression-less. They looked off into the distance with such an empty look on their faces. They'd occasionally say something to each other, but the lack of expression never changed. It was as if the wind had been knocked out of them and they were trying to mentally and physically re-group, but couldn't. I knew that feeling. I sat there and watched them, and I understood exactly what they were feeling and thinking without even asking or listening to them. I knew.
Within a few minutes, a young girl walked out of the office with her parents. They all walked over to the two ladies I had been watching. The parents of the girl looked exactly as the two ladies did. The four of them sat there, while the girl (I'm assuming about 10 years old) played. No one said anything to each other. They didn't have to. Their bodies and faces said everything. My daughter/niece has cancer...why us... why her. That's what they were saying without saying it. I'm sure that's what they were trying to comprehend, and yet feeling overwhelmed because they couldn't comprehend it. I understood. I completely understood. I felt an anger I hadn't yet felt throughout this process. Picture a pot of water on a hot stove. You know the bubbles that start to build up just below the surface of the water, right before it starts to boil? That's how I felt. And I couldn't stop it. No matter how much I wanted to turn off "the stove", the water in my being continued to simmer vigorously.... As a tear started to swell up in my eyes, I realized that I had let the bottle slip out of Ethan's mouth. As I repositioned him, the nurse called Ethan's name. As I picked up Ethan and my bag, the nurse grabbed his car seat. She was extremely pleasant, which was very nice, because I was looking for any reason to stay in my bad mood... and an unfriendly nurse would have helped me justify being rude. Of course, I wasn't rude. I smiled right back to her and carried on a conversation as if nothing was wrong while she took Ethan's blood from the tubes in his chest. But when she left... I realized the slow simmering thoughts were still there.
My son has cancer.
I just kept saying it over and over in my mind.... with different emphasis on each word every time I repeated.
MY son has cancer.
My SON has cancer.
My son HAS cancer.
My son has CANCER!
And not just any cancer. One of the worst kinds. The kind that even the best of specialists all over the country haven't seen very much of. The kind that has so much conflicting information out there that there really is no definitive solution/cure/treatment because not enough research has been done due to its being so rare! Before I could let out a scream, Ethan started crying. He needed to burp. As I was burping him, the nurse came back. We were free to go, and she'd call me later today with the results of his blood counts. She was beyond friendly. Probably the nicest nurse (person!) I'd ever met. Ethan kept smiling at her. She kept commenting on how handsome he was and how precious his smile was. I had to agree with her. She commented on his big blue eyes... I said, he gets them from his dad. She asked to hold him, and then commented on how cuddly he was. I had to agree again. He is a very lovable baby. She calmed me down... I'm a master at facades, so I assure you she didn't know I needed it. But I did. I needed to be rescued from the simmering water in which I was slowly starting to drown.
As we left the hospital, I started thinking about fear. Fear is a mental death trap. My thoughts strayed from the fear of the possibility that Ethan's treatment might not be successful to the fear of the possibility that what if he did go into remission one day, only to have the cancer return when he was 3, 10, 16, 21, or even 35 years old. I don't want him taken away from us now, let alone in a few years.
It all started last night... I knew I shouldn't have started to "learn" more about JMML. I have purposefully not read the information that the hospital gave us about childhood leukemia. And I had purposefully not "googled" JMML specifically. Until last night... and let me tell you that nothing I read was helpful, insightful, or encouraging. Nope. Everything I read kept sinking me lower and lower into a pit of despair. Now remember, I said that everything out there about JMML contradicts something else that's out there about JMML. And, of course, I happened to stumble upon all of the depressing facts of just how untreatable and severe a JMML diagnosis really is. Thus the reasoning behind my sorrow today.
Fear. It is crippling. And even now, as I try to overcome my fears with faith and trust that the Lord's going to answer my (our!) prayers.... I'm stuck. I know there are many people out there who pray for a miracle or healing in their loved ones. And I'm quite sure that they pray, believing in complete faith that it will happen... but sometimes, it doesn't. How do you reconcile the fear of not getting the answer you hope for, with trying to have the faith that you will? It's a puzzling back and forth of the mind.
All I can come to grips with is the answer that my very wise husband gave me last night. We can have faith that God is going to take care of us regardless of what takes place in our lives... and we can pray.
Several times in the Bible, it appears that God had his mind set on something, and then changed it because of prayer (2 Kings 20:1-5, Genesis 18:26-33). I don't know the will of God in Ethan's life. I don't know the will of God in mine and Adam's lives. But I do know that I can pray. I can cry out to the Lord that mine and your prayers for a miracle healing be answered. Not just until Ethan is 8, 18, 38 or 58... but healed wholly and completely of this disease. That he may have a long and blessed life here on earth.
It's hard... but I can't give up that hope. Please don't give up either. Keep praying. I've never felt so connected to a body of believers as I have over the last several weeks. Together we are a united front before the throne of God... collectively kneeling and asking for the same thing.
Heal my baby boy.... Heal my baby boy.
Thursday, May 1, 2008
First Experiences
It's amazing how you pay more attention to things when you're faced with certain realities. How many times did I drive with Ethan in the car before we found out about his leukemia. How many times did Adam, me and Ethan drive around to various destinations and not think twice about it. But all of a sudden those small things have become so much more important... more valuable... because we now understand just how precious one day can be. Just this morning I was thinking about the truth behind the saying "Each day is a gift". Yes, it is! When I woke up this morning, I got one more day to be Ethan's mom and Adam's wife. Two pieces of who I am that I treasure more than anything else. People tell us that they would not be able to handle what we're enduring with regard to Ethan's illness. True, it's not ideal to randomly find out that your (at that time, 11 week old) son has a rare, life-threatening form of leukemia... and that even with successful treatment, his chances of long-term survival are 50/50. And if someone had told me this was going to happen before it did, I am quite sure I would have melted. But when it DOES happen to you, you realize (maybe for the first time) how true God's Word becomes.
For instance:
"I will not leave thee or forsake thee".... Never have we felt alone during this process. Yes, we have felt weak, tired, worried, frustrated, or sad... but never have we lacked for support, encouragement, or love. God has revealed Himself many times, and often through each of you.
For instance:
"A peace that passes understanding".... No, it doesn't make sense that Adam and I can get out of bed each morning, let alone function or laugh.... but we do, and we can.... because there really is a peace that goes beyond what you understand.
"My grace is sufficient for thee".... You don't think you could endure someone else's trial, but that's because it's not your trial. If it were your son, daughter, wife, or husband, you'd do whatever you need to do and you'd be able to do it because God gives you the grace and strength at the very time in which you need it. That has been extremely true for me and Adam.
"I will not leave thee or forsake thee".... Never have we felt alone during this process. Yes, we have felt weak, tired, worried, frustrated, or sad... but never have we lacked for support, encouragement, or love. God has revealed Himself many times, and often through each of you.
"Fearfully and wonderfully made".... The Lord brought that verse to me several times while I was pregnant with Ethan. Each time I heard it or read it, I was calmed from whatever anxiety I was facing as a first time mom, because I knew that God was working out all the details in Ethan's body and that he would be just as God wanted him to be. Even now, people send me that verse and I'm reminded that the disease of leukemia is not defining Ethan. God defined him long before we found out he was sick. Ethan was made with the loving and wonderful touch of God Himself. He may seem "broken" to us because of his disease, but he's not.... he is fearfully and wonderfully made.... and was made especially and perfectly for me and Adam.
Another day to be Ethan's mom and Adam's wife...
What a great day.
Speaking of today... Ethan had several "first" experiences... not that he's really aware of them, but he will be one day! Well, his first ice cream trip started last night. The 3 of us went for an ice cream run. Adam ran in and got us some goodies and we ate it in the car. I was half tempted to dip the very tip of Ethan's pacifier in my strawberry goodness, but he was asleep... and I thought he'd have plenty of time to develop bad eating habits (no need to start it too soon!). And then today, we went for our mommy & son drive. Mommy stopped to get a breakfast sandwhich - drive thru of course - and then we were off! He played with his hands and smiled for a while, then cried, then fell asleep. But it was great.
Our first stop was at the recreational entrance of the Farmington River. I tried to fit his car seat into a kayak, but it wouldn't fit. I'm kidding, but I did tell him that one day we would go tubing/kayaking down that river. I have several wonderful memories of doing that back in Texas with my family.
Then I showed him a tribute to those that died for our country in World War II - he fell asleep at that point. I fear this is a prediction that history may not be one of his favorite subjects.
Then we came back home.... but not before mommy got some Sweet Tea from McDonald's. It was simple, but great. Not the tea, but the morning. Although, the tea was really good, too.
We go back to the hospital tomorrow for our next outpatient visit. Be in prayer that Ethan's blood counts continue to be good, that we can come back home, and that they have some updated information for us about a donor.
And just in case you didn't know, YOU, just by reading this, are a blessing to us!
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