Friday, May 30, 2008
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.
Thursday, May 29, 2008
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
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
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
Malachi 3:3 says: 'He will sit as a refiner and purifier of silver.'
Friday, May 23, 2008
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
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
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
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
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
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
Tuesday, May 13, 2008
Monday, May 12, 2008
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.
Saturday, May 10, 2008
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
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.
Friday, May 9, 2008
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
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!
Wednesday, May 7, 2008
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.
Daily thanking God for each of you....
Tuesday, May 6, 2008
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.
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
After 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.
Friday, May 2, 2008
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
"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.
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 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.