Monday, June 30, 2008

Good to be home again

Since I said a mouth full on Friday, I will keep it short and sweet today....

Thank you so much for praying for Ethan. This past round of chemo (his 4th round overall) was the best round as far as side effects go. No mouth sores, no nerve or muscle pain (judging by his lack of inconsolable crying), no eye swelling, and no new rectal sores. AND, as an added bonus, Ethan slept through the night each night we were at the hospital - even with all the poking and prodding they have to do every couple of hours during the night - which means mommy slept through the night, too (I'm talking 8 to 9 hours)! What a difference sleep can make.... even if it is in a hospital bed. Ethan's fissures (the rectal tears) did get aggravated again and began to bleed, and the skin around his bottom got burned by the chemo (coming out in wet/dirty diapers), but once I clean him up (carefully, since it hurts him) and soothe the area with cream, he seems to be fine and dandy. Just pray that the fissures don't get infected and that that the burn clears up quickly.

I just can't fully express how thrilled I am with how well he did. They discharged us last night and we got home around 9:30, and even this morning, Ethan is so active and happy. It's amazing! Nothing short of God's mercy, protection and grace... so thank you so so so so so so much for praying for him. Your prayers have certainly been answered along the way. His central line still has the large scab over the insertion site (place where the tube enters his chest), but the nurses/doctors didn't seem too concerned about it. It is a rather large scab, but it doesn't seem to be affecting the actual line itself (meaning the tube is still open and active, which is good!). The spongy medical patch that stuck to it a couple of weeks ago has almost completely come off with each cleaning and bandage change we have to do each week. Continue to keep his central line a part of your prayers for him as we want it to always remain "infection-free".

No new update on his transplant date, but we will find out more later this week. Please continue to pray about his spleen. I really don't want him to have to go through surgery right before his body has to go through transplant. It is a little bit smaller and softer today - after the chemo - so I'm praying it will stay that way and we don't have to be faced with a decision to take it out.

You're prayers are a wonderful part of our lives. Thank you so much for that!

Friday, June 27, 2008

A Statement of Faith & Some News, too!

God just isn't letting me let go of this Faith issue I appear to have. I honestly thought that because I believed in Ethan's healing.... that he will get a miracle.... that was all there was to it. As I mentioned yesterday, though, there is more. I referenced this yesterday, but there are a lot of expected issues and side effects that could become a part of Ethan's life, once he goes through transplant, that I've been very sad about. (You had the warning yesterday that the details could make you too sad to even indulge in chocolate, but you might want to have some handy, just in case!)

I've talked to doctors and other moms who have the experience of their babies going through this type of transplant for leukemia and the results are always the same... though some do vary from mild to extreme. For instance, before the transplant, Ethan will go through a process of chemo and possible radiation to basically "kill" Ethan's immune system, any existing cancer cells, and keep any new cells from growing. Any by new cells, I mean ANY type of blood cells. So that when the time is right, the donor's cells are put into Ethan's body with the hope that the new donor cells start to grow and develop and that Ethan's cells are permanently "out of the picture".... since Ethan's cells have cancer in them, you don't want them to return to his system.

Sounds good, right? Well, it takes a long time for the new donor cells to take shape in the patient's body. During that waiting period, Ethan will be given heavy doses of other medications to keep his body functioning since he won't have any immune system for a month or more as we wait for the new cells to develop. Those medications range from steroids to morphine and many, many others. The medications are also used to help Ethan's body fight against any potential GVHD (graft versus host disease - when your body rejects the donors cells - if a patient gets GVHD, then there are a hundred other complications with that disease that I won't bore you with now). Anyway, all of this medication is necessary, but it can cause complications with your organs, your lungs/ability to breath on your own, and if radiation had to be used in the beginning, then your assured that there will be delays in your child's development. For example, when babies are this young their brains are in the prime development stage... radiation affects that a little bit. Meaning, they may be a little delayed in learning to say words, and the steroid medications cause muscle deterioration, so physical therapy is needed once you're able to go back home to help build up the strength in their legs, upper body, etc. to help them learn to crawl and walk. To put it in perspective, there are situations in which some kids that go through this didn't start walking until they were 2 or 2 1/2 (and this is only with the help of a lot of physical therapy, many times a week), whereas kids are usually walking around 1 year of age... sometimes sooner. Radiation can make kids smaller than they'd normally be too.... luckily for Ethan, Adam (his dad) is 6 foot 2 inches, so hopefully if Ethan looses a few inches it won't be that big of a deal. Also during this process, the "mouth sores" and ulcers that chemo causes also develop in the stomach and the entire GI tract making the child not want to eat because of the painful burning sensation that consumes them with each attempt, so they loose their appetite early on in the process. A feeding tube in inserted to help with this problem and it is inserted into their nose and goes directly into their tummy and food is given that way. It seems like a good process, but because they are using the feeding tube for so long, children literally forget how to eat. They forget how to suck and swallow and it can take many months to re-train them.... If for some reason they can't do a feeding tube, then Ethan would get injections of protein/fat into his veins... this is called TPN. But because it wouldn't be going into his stomach, his digestive tract stops working. So when you try to start foods or formula again down the road, his tummy wouldn't know how to process it for a while.

I won't continue with everything else.... primarily because I get 'down in the dumps' just thinking about it. There's just so much.... But anyway, I'll move on to my point.

Why am I telling you all this after I said yesterday that I wasn't going to get into the details? Well, because I think these areas involve the "faith issue" I'm dealing with right now. Or better, that the Lord is dealing with me about. Of course, all of these problems are a small price to pay for Ethan's complete healing and I certainly know that. I know some may read this and think, "well, it's not like he won't be able to walk at all, he'll learn it with physical therapy". And I am thankful for that, but again, I'd be lying if I said the awareness of these side effects and how common they are didn't make me sad. Ethan is so strong and vibrant right now, that to think of him losing any of this momentum, just makes me sad. It's hard to explain.

Which brings me to the title of my post today - A Statement of Faith.

God knows my heart and I'm sure you have been able to see it throughout these past few months.... I completely believe Ethan will be healed of this disease. I know it with my whole heart. I know he will be our miracle baby (he already is!).

BUT.... as I mentioned yesterday.... and am mentioning again today because God just isn't leaving me alone about it.... He is calling me to MORE faith. And the only area(s) in which I am lacking faith, are the areas that I mentioned above. So, what do I do about that? What is it that the Lord is trying to tell me?

Well, I'd previously made, what I'm calling - a statement of faith - that I believed Ethan was going to get a miracle healing. I've shared that with you before. But I've not put that same faith into the WHOLE process. I've been so focused on Ethan's healing, thinking that asking and believing for that miracle meant I was in a sense, at my limit for asking for anything else. I had told myself, "God is going to heal my son.... anything that happens in between now and then, well... I just have to deal with". I think that the Lord Jesus has been eager to show me that there is no limit with Him. We don't just get ONE miracle in our lives. We don't get just ONE answer to the "big prayers" that we can't ask for the same answers to the "small prayers". God is limitless. Our minds and our understandings, of course, have their limitations. And I think we often (well, I often) put those limits on God.... primarily on His grace, His mercy, His giving, His willingness, and His love. I believe therein lies the breakdown of the "deeper faith", or lack thereof. I'm struggling for the words to really describe what I mean, but I trust that this makes sense to you.
I gave God the BIG problem. Ethan's healing. But I didn't seem to think that He would be willing... or loved me enough... to take all of it. I didn't think He'd give me Ethan's healing AND an easier time during the transplant phase. But why?

For example, say you needed a new car.... you lost your vehicle for whatever reason, but desperately need the transportation. A generous friend tells you that they want to buy you a car. You're so touched by the unexpected gift you'll soon receive, and feel it is WAY too generous, that you wouldn't dare to ask for a specific color, make or model. You'll accept whatever they choose to give you and you'll be extremely happy just to have the new car. But what if that friend wanted to not just buy you a car, but buy you the EXACT car that you wanted. They wanted to know the color you desired, whether or not you wanted leather seats, 4 wheel drive, 2-door or 4-door, stick shift or automatic. I'm sure you'd not be fully honest about your desires because you'd feel kinda selfish. Instead of saying you want a fully-loaded, 10 disc CD player with surround sound, convertible corvette with a GPS navigation system and heated leather seats.... you'd say that you really didn't have a preference and you'd be happy with a used car from the junk yard. But the point is that your friend is very wealthy. Money is no problem for him. He WANTS you to have whatever you really want... but he doesn't end up giving you the corvette because you were never honest enough to tell him your true desire. And though you're still very happy that he blessed you with a car, your arm is getting tired of manually rolling up and down the windows, your radio barely works, and every time it rains your doors leak.

By not having the faith, the boldness, the trust or the understanding of who God is to ask Him for all the "bells and whistles" outside of Ethan's healing - to take all of the anticipated complications with Ethan's transplant and to shock everyone with the additional miracle of an easy ride through it all - I'm in a sense putting a limit on God in many ways, but also putting a limit on my faith. In the coming days, I am going to come up with a new "statement of faith" about the short term and long term complications we're told Ethan will endure.

And I'm going ask the Lord for the corvette.

I know I've said so much already, but I've saved the best information for last. Boston called me yesterday evening and they have a match for Ethan! Due to Ethan's blood type and details of his cancer, they were not able to find a bone marrow match for him. However, they found 2 cord blood matches for him. A 6 out of 6 match is considered a perfect match. They didn't find a perfect match, but they found a 5 out of 6 match and a 4 out of 6 match. They are hoping to use the 5/6 match, but they have to confirm that there is no sickle cell in that blood... for some reason it wasn't tested before. PLEASE be in prayer that they are able to confirm that there is not sickle cell, so that we can use that match for Ethan's transplant. If they are unable to determine, then they will use the 4/6 match so as to not take any chances. Please also be in prayer for wisdom to the doctors, as the Hartford docs and the Boston doctor will be discussing whether or not to remove Ethan's spleen prior to transplant. I'm not as concerned with him not having a spleen as I'm concerned with him going into surgery. I just want the Lord to clearly lead the way in this decision. I'll update more about the 'next steps' in the coming days as we learn more, but praise the Lord that we have a donor match and that the doctor feels confident enough that the 2 options we have are good enough to move forward!

It's both a scary and exciting time for us. May God bless you all for praying.

Thursday, June 26, 2008

I feel the Lord calling, even urging me, to deeper faith. I thought I had the faith part of this whole journey fairly under control. I have no doubt that Ethan will be healed of this disease and I have no doubt that God is all-knowing and all-powerful. But I feel He's telling me, there's more. There's more? I believe Ethan will be healed, what "more" is there?

But there is more. And apparently, there's a lot more.

I have a devotional book (well, it's actually two books in one) - "Streams in the Desert" & "Springs in the Valley". And I've come to really love this book (thank you, Carrie!). However, lately, day after day after day, each devotional entry is about Faith. And not just your basic, every day kind of faith... but challenging, powerful, even commanding!, type of Faith.

Let me back up....

Last night I was talking to Adam about how disappointed I was. He was trying to figure out what I was sad about and I wasn't able to describe it other than to say that I was disappointed. He thought I meant that I was thinking "why us" or "this isn't fair". But that wasn't what I meant. I do not at all have a "why us" attitude about this situation with Ethan. In fact, my thought process is often, "well, why not us". And I certainly never entertain the thought of "this isn't fair".... because for me to say that, I'm essentially saying that there is someone else out there who should be dealing with this instead... and I just really don't feel that way. I really don't. But to say that I don't ever experience sadness or have desires for us to be doing "normal" family things each day, would be a lie. And the only way I can sum that up is to say that there are times in which I am disappointed. Again, not disappointed in the sense that I don't think this is fair, but disappointed in things like not being able to take Ethan to a pool this summer and walk with him in the water for his first splashing experience. Or disappointed that he will have to re-learn how to suck and swallow a bottle due to the feeding tube he will have for several months, disappointed to think about possible delays in his development (crawling, talking or walking) because of the various treatments he will go through, or disappointed that Ethan and I won't get to see Adam every day when we go to Boston..... stuff like that.

Anyway, after Adam left to head home for the night, I opened the devotional book I previously mentioned and yesterday's entry was about powerful, commanding faith. Which brings me to what I started talking about at the beginning of my post today. Every day lately, the message I read is about faith. And each day I feel the words are more and more pointed at me, provoking my thoughts that God's not finished with my level of faith.

It's not enough that I believe Ethan will be healed. There is a long journey between now and the day Ethan is cured.... many, many months.... possibly even longer. And though I believe the end result will be Ethan's healing, the "in between" I'd already resigned to the fact that it will be a very rough road. Without even being aware of it, I've let my mind wander about what Ethan will face the during the transplant phase and in the months after.... and it's often not positive thoughts. I've become mentally weary thinking about all we will have to endure until the day he is determined to be cured of his cancer... and just assuming there will be more bad than good. Because that's what they tell you will happen (If I listed all the junk Ethan will go through during and after his transplant, I'm sure you'd be too shocked and depressed to even eat chocolate! As a bone marrow transplant is the hardest transplant on the body, more than any organ or other kind of transplant). And, like I'm sure I've mentioned in other posts... I have a hard time looking past all of this. I struggle with seeing any "fun" down the road - family vacations, etc. I see Ethan being healed, but I struggle with really seeing what "normal" looks like after that.

I say all of this to say that the devotionals I read keep pushing the fact of deeper faith. And last night's was one of the most challenging of all. As I was reading, I was understanding what the Lord was trying to tell me. EACH step of this journey, He wants to be a part of. Not just the overall picture (aka: Ethan's healing). There are many steps that will bring Ethan to that healing and each of those steps do not have to be as hard, as painful, or as traumatic as I've assumed they would be on his body. I felt as if the Lord was telling, through the verses and words I was reading last night, to not stop pressing and stretching my faith about all of even the small details. Even so much as to challenge me to move into such a faith as if to command the power of the Lord's hands into action.

Moses parted the sea, Joshua was able to cause the sun to stand still, Elijah was able to stop the rain and have it start up again at his will, These examples are given to us for a reason. Though each of these are acts of God's power, His power was ignited to move by the faith of the ones asking Him. They assumed what they were asking would happen simply because they knew God - really knew Him - and didn't have any reason to doubt that He had given them full access to His power through their faith. How often are the words of our prayers, more habitual than sincere.... full of more unbelief than actual faith. If you stop and really think about all of this, it can be overwhelmingly inspiring.

There are many examples like these throughout the Bible. And though I could write more about what I feel I am learning about this, I will end by saying that faith is more than I think we understand it to be.... well, at least more than I've ever understood it to be.

And I have a feeling I've only just begun to find out how much more there is.

Wednesday, June 25, 2008

So far, so good

Later today Ethan will start his third day (third bag) of his 6 day chemo medication (called Ara-C) and he will get the last dose of his other chemo medication (as that's only a 3 day medication, called VP-16) and the OTHER chemo in this three-part mix was given to him on Monday and that was only a one day medication. Whew! So far, he's been great. No problems or side effects right now, but typically they start to appear a couple of days after the "three-day chemo" ends.... which will be today. So, if he responds like he did last time, I would expect the pain he experienced last time to begin surface tomorrow evening, getting potentially worse by around Saturday. Last time, you couldn't "see" any of Ethan's side effects, but the inconsolable crying was a definite clue that he was either experiencing jaw pain, nerve pain, esophagus ulcers and/or stomach cramping... all of which are side effects of some of his chemo meds. Now that we know what to expect, we can be a little more proactive with his pain and nausea medications, but still be in prayer that no other complications surface and that even with the side effects that we're anticipating, that they'd be minimal.

He's been so good the last few days.... laughing, babbling, playing with his toys. He's just so precious! I did notice a bit of a runny nose this morning and some discharge in one of his eyes. They are going to a culture to make sure it's not serious, but we think he may have caught a little cold. It's not in his chest, though, so that's good.

We haven't heard from Boston yet, but I expect to at least have an update on Friday. I was talking with one of Ethan's doctors yesterday about Ethan's spleen. It is possible that his spleen will need to be removed before his transplant. I asked the doc to give me a quick pro & con as to why Ethan would have to have his spleen removed and he said that the "pro" would be that because it's so large - and housing so many cancer cells - it could be beneficial to remove the spleen to get all of those "hidden" cancer cells out of his body, allowing the transplant to focus on the new, growing cancer cells. The con, obviously being that he'd be living without a major organ for the rest of his life (your spleen helps your immune system fight off infection), but there are many people that live normal lives without their spleen. So.... all of that to say, we still don't know if Ethan's spleen will need to be removed or not, but I'm feeling confident that either answer is okay. We just have to see what the folks in Boston have to say about it.

I'll close with a "thought for the day" that was sent to me via email...

The Will of God never takes you, where the Grace of God will not protect you.

Tuesday, June 24, 2008

Find some water to walk on

Thank you for your prayers! Ethan had not been on ANY form of medication since last Wednesday night and we didn't start chemo right away because they needed his immune system (his "ANC") to strengthen a little bit. While waiting, we were praying that the progress we had made with his blood counts wouldn't be lost. Praise the Lord, because when we were waiting to get admitted yesterday, his blood results showed that his good cells stayed high and the bad cells stayed low. AND his immune system level (ANC level) had jumped from 84 to 1300! So we were good to start his 4th round of chemo. It will be the same 3 chemo medications he got last time since that seemed to have worked well. The only difference will be that he will get chemo for 6 days as opposed to 7. This is because they want to ease up on his immune system a little bit. I like the idea of one less day of chemotherapy! Everyone here anticipates (as do we) that this will be his last round of chemo at the hospital here in Connecticut. I think everyone is thinking we will be in Boston preparing for the transplant before Ethan would need another round of medications. That's not to say that he won't get chemo anymore... it would just be given to him in Boston. I'm hoping that's the case. I'm ready to move into the next phase of this process.... well, as ready as I can be right now.

I was reading a devotional entry last night and was reading about the story of Peter walking on the water to Jesus:

Matthew 14:28-31: And Peter answered Him and said, “Lord, if it is You, command me to come to You on the water.” So He said, “Come.” And when Peter had come down out of the boat, he walked on the water to go to Jesus. But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!” And immediately Jesus stretched out His hand and caught him, and said to him, “O ye of little faith, why didst thou doubt?"

I've heard this particular story in the Bible many times, and each time I think I have a different opinion about Peter's example to us... and what that whole experience means for my life. As I sat and wondered last night, I believe that Peter knew to believe that Jesus was who He said He was. I think that Peter did believe in the power of God. And I think Peter was brave (in the sense that we know "brave" to be) in taking the first step of faith. But, as we can see, the first step isn't enough. One step forward in faith... that first step is extremely important, but it isn't enough. Peter took the first step.... he believed.... he had faith.... but the winds blew and the storm raged - and - he - became - afraid. Where there is fear, there is doubt, and faith cannot thrive. Where there is faith, there is no doubt and fear has no power. That's the lesson the Lord continues to remind me lately.

Right now, though, I think what's more interesting to me, is that even when Peter started to sink, in the middle of his fear.... he still knew that only the Lord could save him. He called out to Jesus and asked Him to help him. Almost in a sense, in my opinion, asking God to forgive him for doubting. I've always thought this story to be an example of "not enough faith". But when you really break it down, it's an example of what a mixture of fear and doubt can do to faith.

I think Peter did have reason to be afraid, he was stepping out onto WATER and then after a step or two, all of a sudden winds were blowing all around him.... maybe even waves building next to him. It makes sense to me that he would lose focus. It makes sense to me that he would be afraid. It makes sense to me that he would panic...

And to me, that's the point of this example.

That's the point of this story.

In the midst of every fleshly reason to fear, to panic and to lose focus... God is standing there asking us for complete faith.

Asking us to "Come".

Asking us to know, to truly believe, that even the most howling of winds are at His command. The most violent of waves are in His control.

All we have to do is walk forward... not just one step, but step after step after step... steadily... faithfully... knowing He is, He was, and He will be.

p.s. - Sharon, who left me a comment about your son who was diagnosed with leukemia at 4 months and is now 6+ months post transplant, please email me your email address ( I'd love to ask you a few questions. Thank you!

Monday, June 23, 2008

Ethan is 5 months old today!

I can't believe our little guy is already 5 months old - today! This month has gone by fast. I thought I'd add more pictures of our little cutie pie to show you how "grown up" he's getting!

Also, we go back to the hospital today to get re-admitted for Ethan's 4th round of chemo. Please be in prayer that his immune system is ready to begin treatment again and that the side effects are minimal, with no new complications. Thank you!

Happy 5 Months, Ethan!
You make us laugh all the time...
Your daddy and I love you very much!!

Friday, June 20, 2008

I'm in tears...

I have tears streaming down my face and there's not one particular reason, but many. I just got off the phone with our contact at Boston Children's Hospital for a transplant update and she told me that the donor samples have all come back to them now, and they are in the Boston lab for final testing. Then she said.... "So we should have the results for Ethan's donor very soon." As I'm talking to her, I just started to cry. She was very kind and patient with me, as I had her repeat those words to me several times. She believes that within a week or two, we will be getting a phone call telling us that they have a donor match and they are ready to talk to us about next steps. By this time, I'm bawling with quick, short breaths in between each word. She didn't know if the samples were bone marrow samples or cord blood samples, or a mixture of both. I asked that if it came down to them finding a match in a bone marrow sample AND in a cord blood sample, would we be able to hear the pros and cons of each and make the decision which we would prefer Ethan receive? She said yes, if it came down to any type of possible options, the parents get to decide which path to take, after the doctor has expressed her opinion and information. I thanked the woman repeatedly, hung up the phone and just started crying even more.

I think these tears represent a myriad of emotions.

I'm crying tears of joy because this long process in waiting for a donor match is finally at the end.

Crying tears of fear because everything we've been going through the last 2 1/2 months has oddly become routine and "normal", yet this next chapter is so full of the "unknown".

Crying tears of thankfulness to God for getting us to this point.... Lord, please do something great with this last step of the donor process. Please direct us towards the best option for Ethan, whether it be cord blood, or bone marrow.

Crying because I'm just a scared mom.

Crying because I'm a happy mom.

Crying because of the difficulty and sickness I will have to watch my baby endure during the transplant and for the days, weeks, and months to follow.

Crying because we are one step closer... one BIG step closer to our sweet Ethan being healed and cured of this disease. Oh God, do something great! PLEASE DO SOMETHING GREAT....

Oh dear one reading this right now, thank you so much for praying. Thank you for helping us plead to the Father about each step of the process we must go through with Ethan. These tears are also for you. My most sincerest form of gratitude is flowing down my face and filling up my eyes to the point that I can't even see what I'm typing. Thank you. Some day, some how the Lord will bless you because of the blessing you've been to us.

I was reading another blog/website the other day and read this woman's heart as she was sharing it with her readers and part of her story included the words.... "but I learned to keep Him at arm's length in the event that He let me down." I stopped and read that over and over and over. Each time I gained more and more understanding as to what faith really is, as opposed to what we choose to think it is sometimes. I was tenderly convicted by her statement, as I could completely relate to it in my own life. The light came on in my head and in my heart, as I contemplated. We must let Him in. There is no other choice. We must trust Him completely. Our Faith has to be constant, real and steadfast... not wavering.... because otherwise, we're keeping Christ at a distance. Reason being, I think, is that in a sense we're protecting our image of Him in case He were to let us down. We're afraid to truly "believe" because.... what if He doesn't come through in the way that my "complete faith" believed He would.... then what would that say about what I know about my all-powerful God.

But that in itself is the hiccup.

Slight doubt, means there's not complete faith. And we're called throughout the Bible to have such a faith. Lord, help me let go of the fear. Help me let go of all that I know or think that's not in line with Your truth. Continue to chip away at the chains around my heart and bring me into the power of complete, doubt-less faith.

Matthew 21:21 Jesus answered and said unto them, Verily I say unto you, If ye have faith, and doubt not, ye shall not only do this which is done to the fig tree, but also if ye shall say unto this mountain, Be thou removed, and be thou cast into the sea; it shall be done.

Thursday, June 19, 2008

Father Knows Best

Well, we didn't end up getting readmitted today. I got a call last night that the doctor wanted to wait until Monday before starting Ethan's chemo again. They want him to have a few days to allow his immune system to bounce back. They measure your immune system by blood work and the results are called "ANC". Based on all the various blood tests and differentials, they can determine how weak or how strong your immune system is (in other words, determine your ANC). You generally want to be above 1000 in number. Between 500 and 1000 puts you at risk of infection, and anything below 500 means your immune system is unable to fight off infection by itself. Chemo always makes your immune system weaker, so you don't want to start a new chemo treatment with an immune system that's already weakened. Ethan's immune system is at 84 right now. I know that appears to be really awful, but it's not unusual for chemo patients to have an immune system level (ANC) of even zero from time to time. When the levels are that low, you just have to be extra careful that germs and such are kept away from him. Anyway, just a little "lesson" in how they determine all of this information. Needless to say, you can see why they want to wait a few days before starting the chemo. I'm happy to have the weekend at home, but this also means that Ethan will not be on any form of medication for the next 4 days (his "at home" medication stopped as of last night). Please be in prayer that his immune system rebounds quickly (no reason to expect that it wouldn't) and be in prayer that his red cells and platelets stay at the level they are at, or even higher. We just don't want any progress he's made thus far to take any steps backwards during the next 4 days before we start chemo again. But, it's funny, because I was wanting him to have a little break in between medications anyway, but was told we should just move forward... until the doctor reconsidered this evening and moved our admittance date to Monday. So, it looks like the Lord worked it out they way He wanted.... hence the "Father knows best".

Please also say a prayer for his central line (the tube in his chest). It has a large scab over the stitches in which the tube comes out of the skin, and the medicine "patch" (round spongy thing that goes over the scab to try and loosen it) has stuck to the scab and will not come off. I did the best I could last night at trying to remove it without pulling away the large scab (which would cause a tremendous amount of blood, pain for Ethan, and potential infection), and then bandaged him up, but I'm calling the outpatient area this morning to find out what needs to be done about removing the rest of the sponge-like patch. As many times as we've changed his bandage, this is the first time we've not been able to remove the patch completely and it's VERY stuck to his insertion point. This is not good, so I'm hoping something can be done without causing any type of infection in the area. As I've mentioned before, this central line/tube, is how he gets his blood transfusions, chemo, antibiotics... everything. Essentially and literally, his "life line". So as you can imagine, this is heavy on my mind right now.

I have much more that I want to say... more that the Lord has put on my heart in general... but I'll save it for tomorrow. Thank you for praying.

Quote for the Day - When you can't see the light at the end of the tunnel, turn to the Light of the world.

John 8:12 - Then spake Jesus again unto them, saying, I am the Light of the world: he that followeth me shall not walk in darkness, but shall have the light of life.

Wednesday, June 18, 2008

Another answered prayer

Ethan had another outpatient visit late yesterday afternoon. This was to be the visit that told us whether or not his last round of chemo was successful or not.... and the answer appears to be YES! We needed his red cells and platelets to continue to go up in number and for his white blood cells to stay low. I got a call very late in the evening yesterday telling us that Ethan would NOT need a transfusion today because his platelets had gone from 63 to 370 (that's the highest his platelet count has been since all of this mess started!) and his red cells went up from 9.6 to 9.9. The red cells really could be higher, but they are at least stable and went up as opposed to down. I believe this means that the chemo was effective and the at home medication we give him appears to have been effective as well.

This is important because they consider what happened after his 2nd round of chemo (the time before this last round) not effective. Ethan needed transfusions almost daily after we were discharged and his white cells (the bad ones) were consistently on the rise. Thus, the need to change the method of treatment last time. I am so happy that the decision to add 2 more chemo medications seemed to have worked well for Ethan. I assume that is the same pattern of treatment we will adhere to when we get readmitted tomorrow (Thursday) for his 4th round of chemotherapy. There was more vomiting and underlying pain from some of the chemo meds (jaw pain, nerve pain and constipation) but we at least know that now and can be more proactive about the pain medication.

His latest blood tests found that there are still leukemia cells growing/developing, so we do want to start the chemo tomorrow as planned, however his immune system is still quite weak. Please pray that his immune system can recover a little more overnight so that we can get readmitted tomorrow and begin this next session of chemo. The spleen and liver are both still an issue. They have decreased in size slightly, but not enough for there to no longer be a concern. This is still a needed prayer request. Please also be in prayer for this next round of heavy-duty chemo medications for our little boy... minimal side effects, no infection in his central line, and no new complications.

Ethan's ability to withstand all of this is a true testament to God's protection and His continued blessing of answered prayer. Never doubt whether or not your prayers for us matter or make a significant difference, because they certainly do. I've heard many stories of infant leukemia and the problems that occurred throughout the process of treatment and transplant, but your prayers have protected Ethan thus far, and I know they will carry him through. It's funny how much he needs you and the cutie pie doesn't even know it. But I know it and Adam knows it and one day we will take great pride in telling him how people around the world lifted him up in prayer every day and that God honored those prayers. Thank you so much for that. If I could express my deepest appreciation by giving each one of you a super tight bear hug, I certainly would!

A reminder for me today....

"The answer to prayer may be approaching, though we discern not its coming. The seed that lies under the ground in winter is taking root in order to a spring and harvest, though it appears not above ground, but seems dead and lost." - Bickersteth

"Delayed answers to prayer are not only trials of faith, but they give us opportunities of honoring God by our steadfast confidence in Him under apparent repulses." - C.H. Spurgeon

Malachi 4:2 - But unto you who fear [revere] My name, the Sun of Righteousness shall arise with healing in His wings...

p.s. - Megan from Washington State, I haven't forgotten your question about what clued me into Ethan's illness. I figured it would be easier to email you, so please drop me a note... I'd love to chat with you about it! mailto:

Tuesday, June 17, 2008

Looking back

I was reading back through older entries in previous months and was encouraged by all of the answered prayer we've experienced over the last 2 months and 9 days. I look at Ethan now and he is just so strong. I say this all the time, but to look at him, you'd never know he had such a life-threatening illness. He's so spunky and full of life... even after 3 intense rounds of chemotherapy and other medications, over the last 2 months. He does have days of pain and days of a weary body and personality, but he always bounces back. I've been thinking lately what a blessing that truly is. Without God's grace and mercy thus far, Ethan would not be this way. I imagine this disease, at this point, would've gotten the best of him and he'd be listless and sluggishly inactive. But he isn't. Most times he is the complete opposite. And to stop and think about that this morning... well, I'm just overcome with thankfulness.

I've been thinking lately about the reason why Ethan has cancer. In my thoughts I've realized that cancer didn't stumble into Ethan's life haphazardly. When Adam and I first talked on the phone with each other, years ago, that was our first introduction to one another. I lived in Dallas and he lived in Connecticut. We both worked for the same company and long story short, our paths crossed via email and the phone. It eventually turned into a long distance relationship and we only saw each other once a month for only 6 months before I moved to Connecticut. While we were in the long-distance mode, I knew deep down in my heart that God wanted us to be together. It didn't make sense, because I was rooted in Dallas - my whole family and the only life I'd ever known - was there. But I just knew. There were situations that came up from time to time that made me believe the devil himself didn't want me and Adam to get together. I remember thinking one night specifically that he must know something that we didn't, he must think that Adam and I together would be more powerful for the Lord than we would individually and that's why he was working overtime to try and keep us a part.

I finally understand why.

Adam and I together ARE more powerful for the Lord than we would've ever been individually. Not because of anything we've done, but just because of what the Lord needed to do through us. And together, with God, we created a son that's being used to further God's hope and His message to thousands of other people. Ethan's cancer is just a needed tool in order to do that. Yes, his cancer is real, and there are days that I wish this was all just a bad dream.... BUT, his life is serving a powerful purpose. And this small bit that I can see is only a glimpse of all that there is, but it's very real and it's very needed. What an honor... a humbling honor, that God would see fit that we be the parents of such a special baby boy.

Lord, you've been so kind to us. Your hand of protection over Ethan is always evident. Thank You that You've brought us this far, and that You will bring us the rest of the way. Thank You for the promises You've place on my heart about Ethan's healing and even the promise of seeing him run around the bases at a t-ball game. I hold that exciting day close to my heart. Your Word has been more true to me in ways I've never known before. I know too well the apprehension in having complete faith, but I also know that You're showing me there is great Power in complete faith and that apprehension only stands in the way of its release. I thank You that with each new day, You're already there. With each new treatment, each new medication... You're already there. You go before us and nothing gets past You without Your permission or Your ability to stop/change/or fix it. I am learning, in small steps, many things. You know my heart is always desiring preventative measures taken - proactive prayer. But there is something to be said about those things you don't want to happen - happening.... but then being able to see Your hand intervene and show the loving and merciful evidence of answered prayer. Lord God, I pray for Baby Lydia today. You know the tender place she and her mom have in my heart as we will soon be where they are in the transplant process. I thank You that Your hand of protection has been upon her as well, and I specifically ask that the test they run today will show that GVHD has not set into her body. Please also clear up the problem she is having with her central line. Give Liz the daily strength she needs as she cares for her baby girl. God, you've opened my eyes to so much. I realize that life is ever-changing. Joys, problems, pain, confusion, love, excitement, temptation, realization, birth, death, family, friends, bitterness, contentment, happiness, shock, rebellion, smiles, tears, hugs, loneliness, memories, hope.... all of it makes up certain aspects of life here on earth. Yet, there's nothing we go through - good or bad - that is outside of Your grasp or Your ability. You allow blessings, and You allow pain. But in each, You are abundant in Your grace, Your mercy and Your love. And today, I've overcome with thankfulness. Amen.

Sunday, June 15, 2008

Happy Father's Day

To my phenomenal husband:

You give me the motivation I need to get through each day

With the love that you give in your wonderfully unique way.

In the midst of the unknown,

You keep me going with the strength you've shown.

Your humor and perfectly timed thoughtfulness,

Are just a few things that bring me to God on knees of thankfulness.

Today is the day that you're celebrated for the first time as a Dad,

And on behalf of our baby son, I assure you...

You're the best he could've ever had.

Happy First Father's Day!

I love you.

Friday, June 13, 2008


Thank you so much for praying for Ethan's outpatient visit this morning. We waited a couple of hours after his blood was drawn to see if he needed any transfusions. They came back and said his red blood cells and his platelets had gone up, so no transfusion needed! And his white cells (the cancer cells) were very low! This is great news and indicates that this last round of chemo appears to have been effective. We do not go back to check his blood/platelets again until Tuesday, so please be in prayer that over the next several days his good counts continue to rise. His immune system is very low right now, so please also be in prayer that he doesn't get a fever or any type of infection in his system. His spleen felt softer and a little smaller today, which is very good, but we still need it a lot smaller to avoid having to take it out.

Also, I talked to Boston Children's today and they are still in the middle of conducting further testing on the possible donor matches. They have requested additional information from various people, and actually have a person coming in next week for additional testing. I'm not sure if that's the person that the Lord has for Ethan, but I'd love it if he/she were because we need to move forward on this process. Please be in prayer for that person's testing next week and that if that is the person who will aide our son in a miracle, that everything would go smoothly and quickly as their testing is completed. They also informed me that they are also searching for cord blood matches for Ethan. Either a bone marrow or cord blood can be used as a transplant to treat Ethan's cancer, so be in prayer that the best/correct method is chosen for him. I want the most effective, and least traumatic direction chosen for Ethan.

Ethan's case is labled as "urgent", but this is a slow moving process and there is a lot of "waiting"... but I'm so thankful that God is divinely in every step.

We will get re-admitted on Thursday to start Ethan's 4th round of chemo. I'm wondering if it should be delayed a day or so to allow him a break from the "at home" medications before starting chemo again, but I haven't talked to the doctor. Pray for wisdom either way.

As always, and with deepest sincerity, thank you so much for every prayer you bring to the Father on our behalf. You do not know the impact they have on our daily lives.

Thursday, June 12, 2008

Reflection on prayer

I was thinking this morning about a conversation Adam and I had last weekend. We were having a good conversation about Ethan and the blessings we get to see first hand by being his parents. The more we talked, the more discouraged I was becoming about "prayer". I told Adam that the only thing I couldn't come to terms with in my mind was that in the first few days and weeks of Ethan's life, each middle of the night feeding (which was every 2 hours!), I prayed over Ethan's entire body. I may have even mentioned this before, but I would pray very specifically over him from head to toe. I prayed for his mind, eyes, ears, hands, arms, legs, feet - praying for his strength and ability in each area. I prayed for his lungs, his brain, his heart, his spine - everything. Praying earnestly for each and every area of his being, that I could think of, to be healthy.... praying God's protection over him completely.

I'm sure you can see where I am going with this.

So, when we found out that Ethan's blood had cancer violently swimming throughout his body, I felt as though my prayers were in vain. Of course I knew God heard my heartfelt prayers, but I felt like they were more or less ignored. A tinge of discouragement in the "power of prayer" settled into my heart that night and I've never fully gotten past it. As Adam and I were talking, I shared that confusion with him and the following words out of his mouth are words I will never forget. He said...

"Kasey, how do you know that God DIDN'T answer your prayers? Your prayers could have been what saved Ethan from immediately dying from this illness. Your prayers could have been giving him the strength his body needed to get through each day. And when it was time, God placed it upon your heart that something wasn't right with Ethan. He prompted you to take Ethan to the doctor, and that single act alone has saved and prolonged his life one more day. You don't know what your prayers may have actually done for Ethan, so don't assume that they didn't matter."

I never thought of it that way. And what a beautiful way to look at it. I couldn't believe the wisdom in my husband's words (though I shouldn't be surprised) and I will never again question that my prayers for Ethan's health early on weren't meaningful - or answered.

Since that conversation, I've had such a change in perspective when it comes to prayer. I choose to believe that my prayers for our son were extremely meaningful and that each word spoken to the Lord went on to actually bless Ethan in a powerful way.... and will continue to bless him down this road.

I'm sharing this with you so that you find the same type of encouragement that I found when I changed my perspective on what I assumed had been "unanswered prayers". They could have in fact been a significant factor of God's grace and mercy upon the life of my little boy.

Lord, thank you for my wonderful husband and precious son. They are two of the very best gifts you have given to me. Thank you for showing your love for me through them. And thank you that not one single prayer from your children is ever forgotten, misplaced, ignored, or in vain.


p.s. - Be in prayer for Ethan's outpatient visit tomorrow. We need his blood counts to be great! Also be in prayer for some exciting news from Boston regarding the bone marrow search as I will hear from them on Friday with an update.

Tuesday, June 10, 2008

Inspiration and Prayer Requests

Ethan and I spent the day (about 7 hours) at the hospital today because he needed a couple of transfusions. It ended up being a fun day because as he's getting blood and platelets, I'm sitting in a giant recliner and we both get to watch TV, play, eat, and whatever else we feel like doing. Ethan was GREAT during the whole thing and I was pretty relaxed too. As we were there, I met two ladies that left me feeling a bit inspired. They each, like me, were there in the oncology area of Children's Hospital because their child has cancer.

The first lady I met has a little girl, 13 months old, that had a rare cancer develop in the form of a tumor in her chest wall at 3 weeks of age. That little girl (cute as a button by the way!) has had to have 4 ribs removed, and many other surgeries as a result of her cancer. But to look at her running around this morning, you'd never know. And her mom was so full of energy and friendliness that if you were to bump into her in a grocery store, you'd never know the pain I'm sure she's had to bear a long time. The second mom I met had a son getting ready for his next round of chemo and I think he was about 18 years old. I didn't officially meet him, but he crossed my path a few times and I could hear him talk with the nurses. He had such an upbeat personality. I don't know how long he's had to suffer with his (also rare) cancer, but he wasn't held captive by it. It was a normal part of his life and he came in for his treatments, but was making plans to play in a baseball game when this round of chemo was over for him. His whole demeanor was an inspiration to me. His mom was the same way. She was very friendly and moved around with such ease, living life as it came to her and not blinking an eye.

Each of these women and their children showed me something today. I was inspired by their acceptance of the curve ball life had thrown them, and their ability to not let it overcome them. I'm sure there are difficult times, but there was an inner strength that each of them had - as did their children - and I felt as though God was showing me, yet again, living examples of how possible it is to allow this terrible sickness in Ethan become a part of our lives without it consuming our lives. The young man was planning to go play baseball this weekend as if nothing was wrong with him. That 13 month old girl was running around playing as if she hadn't been through the ringer over the last year. And each of the mom's accepted that at this point in their lives, this is the road they needed to travel. But life does go on as well.

I don't know if I'm saying any of this in a way that makes sense, but the bottom line is that after leaving the hospital this evening, I, for once, didn't feel trapped by the fact that my baby son has cancer. For the first time, it felt okay to accept this disease that has happened upon our little boy and even feel comfortable with it. I thank God for the opportunity to see all of this in a completely different way. My prayer is that I have the strength to maintain the clearer vision.

Be in prayer for Ethan the next few days. We go back for our next outpatient visit on Friday. The days in between need to be really good days. We need to see a difference in the size of his liver and spleen (we have seen a slight decrease so far!) and we need his red blood cells and platelets to go UP in number! That trend needs to be consistent in order for the doctor to feel comfortable that Ethan responded well to this last chemo session. If you remember, we tried a different approach to Ethan's chemo - giving him 3 different kinds of medication as opposed to only 1 - with the hopes that his good cells and his spleen respond better than they did before. Please be in prayer that his good cells daily rise in number, that his spleen and liver shrink, and that his white cells (the cancer cells) stay very LOW in number.

I also have another very important prayer request that I'd like to share with you. Our friends, Mike and Amy Lee, are pregnant with their second child. They found out today via an ultrasound that their little baby girl has a cyst on her brain. The doctor indicated that this was fairly common, but that it sometimes indicates Down's Syndrome. The doctor told them that they will do another ultrasound in 8 weeks to see if the cyst has disappeared. If the cyst remains then it could be a strong indicator that the baby would be in danger of having Down's. I asked their permission to bring this prayer need to your attention and they have allowed us to do so. There are thousands of people that read this blog and many prayer warriors that plead to our Father on behalf of Ethan every day. I know you will also be in prayer for baby Micaiah Lee that over the next 2 months this cyst will disappear, never to surface again, and that on the day of the ultrasound Mike and Amy will have the peaceful proof that their little girl is going to be perfectly healthy. Pray that they can feel God's peace and strength during the next several weeks of "waiting".

Thank you for taking to heart all of these requests for our babies.... whether in the womb as baby Micaiah is, or out in the world like my sweet Ethan. They are each in God's tender hands and each in need of your prayer for His intervention.

We love you all.... whether we know you or not.... we love you all.

p.s. - If you'd like to leave Mike and Amy an encouraging message via my "comment" section, PLEASE feel free as I know they will read them and be blessed by your words.

Monday, June 9, 2008

He spoke

I have been slightly behind in my quiet time with the Lord... days just seem to get away from me very quickly when we're home from the hospital. I only have about 13 days before we get re-admitted and those days at home are often filled with daily trips back to the hospital for outpatient visits. I have so much I want to do and so little time to do them. But I was reading this evening in one of my now favorite books, "Springs in the Valley". I read the devotional entry from yesterday and today. Each day's message hit me square between the eyes. I'll try to condense them both in a way that enables you to see what I saw.

Romans 5:3-5 says, "We glory in the tribulations [trials of our faith].... knowing that tribulation [trials] worketh patience; And patience [worketh toward] experience; and experience [worketh toward] hope: And hope maketh not ashamed [not disappointed], because the love of God is shed abroad in our hearts by the Holy Ghost [Holy Spirit] which is given unto us.

That was the opening verse to one of the messages I read. The story went on to illustrate an experience of an artist named Turner who wanted to paint a truly realistic picture of a storm at sea. In order to do so he had a friend take him out into the water on a boat during the next storm. The artist had his friend tie him to the mast of the ship so he could fully engage in the storm. As the furious storm hit, he wished he could be let down and go hide for cover with the rest of the men on board so the storm could just blow over him...but he was tied to the mast and therefore had to endure the storm. After his experience he painted the above referenced painting. When describing the picture, he said, "Not only did I see that storm, and feel it, but it blew itself unto me until I became part of the storm. And then I came back and painted the picture." The devotional entry goes on to say that in life there are, "sometimes cloud and sometimes sunshine; sometimes pleasure, sometimes pain. Life is a great mixture of happiness and tragic storm. He who comes out of it.... is he who dares to accept it all, face it all, and let it blow its power, mystery and tragedy into the inmost recesses of the soul. A victory so won in this life will then be an eternal possession. - written by Charles Lewis Slattery

As I read the above devotion from yesterday, I went on to read the words that today held. The verse of Scripture for today was from Isaiah 40:31 - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

Today's message/entry went on to talk about what it means to have "wings". If you do not utilize the "wings" God gives you, you are never able to engage in the power that comes with them. Obviously I'm not suggesting there are actual wings that we receive, but if you think about it as gaining "spiritual" wings then that verse takes on new meaning... at least it did for me. After I read the rest of the devotional I stopped to actual picture in my mind what it was talking about. With wings you soar above, higher and higher. If you look at something from the ground it can seem insurmountable. Think about being at the foot of a volcano and looking up at it's peak. Or think about being on the ground and looking up at the Empire State Building. From the ground looking up, those things are gigantic. Think about the bird who is pecking along the ground until it sees you walk by and is immediately frightened by your height and build. What does he do? He flies away. Maybe he flies to the top of a power line, or the top of a house. Wherever he decides to go, if it's above you, from that angle your nothing but an ant to him. The very thing he feared the most, all of sudden didn't seem so intimidating when he put his wings into action. As I kept coming up with each of those types of scenarios in my mind, I realized what truth this had in my own life. Ethan's cancer and the lengthy stay, the treatment(s), and the isolation we have to endure in Boston and even when we're able to come back home afterwards had become so overwhelming to me that each time I "looked up" at them, the bigger, the more intimating, the more suffocating, the more never-ending they seemed. All strength is then immediately taken from my body, my mind, and my soul. No hope. And a very dim outlook on what our quality of life will look like.


They (that includes me) that wait (depend) on the Lord shall have renewed strength. Strength enough to soar high above... soar above the fear long enough to be able to have a view that looks down and sees that my fear is not as big as I think it is. Soar high enough above the months of isolation we will have to endure and see that there WILL BE an end and the time in between will be precious bonding time for our little family. Soar high enough to look down at Ethan's little body and not see the cancer - but instead see how his mind continues to blossom, his beautiful face, his active arms and legs, his big blue eyes and perfectly wonderful smile.

High enough to realize that as small as each of those problems all of a sudden appear to be in my mind, they are even that much smaller compared to the power of Jesus Christ, the son of God.

My strength is renewed, my wings are ready for flight and even if I have to fly through the storm I will come out on the other side with a wonderful picture to share.

Sunday, June 8, 2008

Daddy's Voice

I am quite sure Ethan has grown well accustomed to my comforting him. He cries a little less, he calms a little easier, he cuddles a little bit better - when mommy is there. I think he associates "mommy" to feeling comforted - such a sweet experience for me! But, you should see him when he hears his Daddy's voice enter the room. Whether in the hospital or at home, when Adam comes in, Ethan's demeanor is immediately changed. On a particulary hard day for Ethan, he can sometimes go all day without so much as a grin for me, but each and every time, good day or bad, he gets visibly excited when he hears and sees his dad.

Our front door is behind our living room area, so when Adam comes home in the evening and starts talking, Ethan will pull away from his bottle and stretch his neck to find his Dad. So Adam walks quickly into the living room so Ethan can see the person he hears. And he gets so happy! Smiles to no end, babbles back to Adam like crazy! No matter what Ethan has been through during the day, and no matter how fussy or cranky he can get, when Daddy's voice comes into range Ethan is energized and eager. It's a wonderful thing.

I was thinking about that more and more this morning when I couldn't sleep. I was thinking about the role of our Heavenly Father and the different aspects of His being that we need on a regular basis. Throughout this physical, mental and emotional battle with trying to accept that our baby son has cancer, I truly have felt comforted by the Lord many times. It really doesn't even cross my mind anymore that Ethan could die from this disease. I have a comforting peace about his healing, though I'm not looking forward to enduring the 'healing process'.

I feel the comfort, but I don't hear "Daddy's Voice". I don't feel energized and eager about much of anything as of late. Though I believe in Ethan's healing, the future is still empty and bleak in my mind. New "adventures" with Ethan revolve around new medications or hospital trips. New "memories" as a family revolve around some things that you really don't want to remember. Daily activities are more routine than enjoyed. And each day I wait and long to hear from my Heavenly Father so that I'm awakened from this shell of a person. So that I have the energized eagerness about living and doing and being. But nothing.

Comfort isn't always enough. As my adorable son shows me often. Comfort is important - and extremely necessary and appreciated. But so is energizing laughter, the ability to smile, the excitement that overwhelms you so much that your whole body is joyful.

My sweet Ethan, I wish you could give mommy an ounce of the delight that you have... especially the delight you get when you hear Daddy's voice.

Lord.... I need to hear it, too.

Saturday, June 7, 2008

Quick Update

Thank you for praying for a restful night and for Ethan's pain situation. I've decided (at least for now) that his irritability is not from teething. After trying baby orajel and all of the other suggestions, he was never calmed by them. However, he woke up at 3:00 this morning and was a completely different baby than he'd been the last day and a half. He drank nearly all of his bottle without one single tear and he had some different behavior signs that made me think that his issue is constipation and the not-so-healed mouth ulcer in the roof of his mouth. Both of which are side effects from the chemo and pain medication he was on at the hospital and both should clear up on their own in a day or so (hopefully). I am hoping that's the case and he will start to feel better very soon. But I'm so thankful that he was able to eat and rest and I was able to rest as well. I'm praying today is more of what we experienced in the early hours of this morning. God's mercies are new every morning and for us, they started at 3:00 am today! Thank you for praying for us.

Friday, June 6, 2008

Screaming baby, Weary mommy

Well, we did end up coming home yesterday evening, and though I am thrilled to be back in my own environment, it has been a rough 20 hours. Ethan has been extremely fussy and he doesn't have much of an appetite. From the day he was born, he has never been a really fussy baby. He generally cries when he's hungry, has trapped gas, or fighting sleep. Generally easy to console one way or another. That is not the case as of late which indicates to me that something is wrong. But, it's trying to pinpoint WHAT is wrong that's causing my headache right now. I expect he's in some sort of pain, though there are no visible signs of problems in his mouth or on his bottom. The side effects from chemo can be delayed a couple of days and since the chemo stopped around 3:00 yesterday afternoon, we may be hitting the brink of some side effects surfacing. The tricky thing is that the potential side effects from one of the chemo meds he got this time is nerve pain and jaw pain. How in the world do you know if your baby is experiencing that kind of pain? Exactly.... it's a guessing game. I've also been wondering if he's teething. He keeps chewing on his fingers and bites down on teething rings, but with all that's going on with him, it's too hard to tell one way or another. The only thing that seems to calm him for a short while is Tylenol. However, I don't really want to have to give him Tylenol around the clock every 4 hours because that will mask a fever that we need to be watching for any time we are at home from the hospital as that is really our only warning sign that an infection has set in regarding his cancer treatments.

So... needless to say, things are hard for us right now. Please be in prayer that Ethan will start to eat again and that we can better understand why he screams and cries so often. Pray that if the pain is a result of a chemo side effect that it will disappear quickly and if he's growing a tooth, that it will just pop right out!

I talked to the Boston Children's contact this morning. No news yet on the donor situation, but they have been in contact with several people to have further testing conducted. He thinks we should have more information next Friday.

I'd write more, but I'm thoroughly exhausted... Happy to be home, but in desperate need of the Lord's assistance right now with Ethan.

Thursday, June 5, 2008

Cancer Prayer Day

It appears we will be going home later this evening. Ethan's chemo will end at 1:00 this afternoon, they will give him his new antibiotic, red blood cell transfusion, and a platelet transfusion... and then if all goes well, we will be going home after that. I had mentioned yesterday that I'd rather wait until tomorrow just to "wait and see" what (if any) side effects surface, but the doctor just came in and didn't seem to think that Ethan was in danger of any more problems surfacing (aside from what we've already seen). So, with that in mind, they are writing prescriptions for me to have on hand in case we experience any difficulty (vomiting, swollen eyes, mouth sores, etc) over the weekend.

Thank you so much for your daily prayers for Ethan and our family. Your prayers got us through this round of chemo and help to sustain our sanity each day. My brother-in-law actually sent me an email this morning to tell me that today, June 5th, is recognized worldwide as Cancer Prayer Day. So today, think of those in your life that have been impacted by cancer and pray for their healing and strength. Pray also for the families of those who have lost a loved one to cancer. Pray for peace and comfort as they reflect on the memories.

As I was thinking about today being the day of prayer for cancer (although, in our life right now, EVERY day is a day of prayer for cancer!), I reflected on the day that we found out about Ethan having leukemia. What a nightmare and an utter shock it was... and still is at times. Adam and I were talking the other day about some of the best times in our lives growing up and even in our adult life, then we started talking about the worst times in our life and immediately we recalled April 8th of this year - the day before our 3 year wedding anniversary - when we first heard the word 'leukemia' in reference to our then 11 week old son. I can't believe it will be 2 months ago this Saturday. It feels like it's been a lifetime, but then again it also feels like time has gone by pretty fast. Today, I was specifically reminded of how vulnerable we are and how dependent we HAVE to be on the Lord for every thing, every day.

I never know what the next round of Ethan's treatment is going to look like or how he will respond, but we've been in the hospital this time for 7 long days (and 6 long nights!), and I was thinking this morning that with each passing day, we are one more day closer...

One more day closer to Ethan being able to get his transplant.
One more day closer to Ethan being cured of this awful cancer.
One more day closer to Adam, Ethan and I being able to be a family
that engages in "normal" family activities together.
One more day closer to this stormy season in our lives being over.
Oh how we look forward to that day...

Wednesday, June 4, 2008

Last bag of chemo for this round

Ethan will get his last bag of chemotherapy, for this round, in about an hour. It will run for 24 hours, so it will end around this time tomorrow afternoon. Afterwards, we'll probably stay one more day to observe him for side effects, but then we'll be released to go back home.

Last night was a rough night. They gave him a stronger pain medication and that worked great and put him right to sleep. In the middle of the night he woke up crying and again wouldn't eat. I wanted to avoid the pain meds until I could determine that it wasn't just gas or something. But the crying and screaming continued. The nurse brought the pain medication (the name of it is Dilaudid - same concept of morphine, but just a different kind of similar medication), he was screaming as she pushed the medication through his tubes. Then slowly, he quieted and calmed right down into sleep. I have to admit I had very mixed feelings after the whole experience. To see your baby go from extreme crying to a coma like sleep in a matter of a minute is a bit unnerving. But I just said a prayer over Ethan's body and tried to go back to sleep myself. The pain medication allowed both of us some much needed sleep (we both slept until 9:30! that NEVER happens!) and so far, he's had a better day today than yesterday.

He's still throwing up, but it's probably nausea from the chemo. He gets an anti-nausea medication, but as soon as it wears off the vomit comes! He was also vomiting earlier in the week from the antibiotic I mentioned before, so tomorrow he starts a new antibiotic. Be in prayer that it works with his system better. And pray that the vomiting subsides.

He does have a little ulcer type of growth at the roof of his mouth that we think has been causing him the pain, and it's possible that there may be more in his GI tract. However, there are no other visible sores on his tongue or other areas of his mouth. His bottom actually looks better, too. His eyes are slightly puffy, but not too much of a concern right now... we just keep watching to see if they get more swollen before starting any steroid drops. I'm just so happy he's calm today and has had a better appetite. Be in prayer that all goes well as we prepare to go home in a couple of days. Pray that once the chemo stops, we start to see his spleen shrink and that he doesn't need the same amount of transfusions he needed the last time we went home. We need his white cells to stay low in number and his red cells and platelets to stay high in number.

Also be in prayer that we have some kind of good news when I hear from Boston on Friday. I realize it could be too early to tell anything since it's only been a week since I found out they had 12 preliminary matches, but who's to say they couldn't have found something out already!

Thank you for praying for Ethan and for me and Adam. Every single one of your prayers mean so very much. More than you know.

Deuteronomy 31:8 And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed.

John 14:18 I will not leave you comfortless: I will come to you.

Tuesday, June 3, 2008

We had a rough day today. Ethan has been abnormally fussy and refusing to eat. We've not been able to pinpoint what the problem could be. We know he's in pain and uncomfortable, but we can't figure out the root of the problem. I asked for Tylenol to be given to help calm him. He was slightly better with the Tylenol, but not for long. We are going to put him on a stronger pain medication to see if that helps him. We had a stomach x-ray done to see if he might be constipated (a side effect of one of the chemo meds), but it came back perfectly normal. Other side effects include jaw pain and nerve pain.... both of which are hard to detect in a baby. He's had such a rough day. Please pray that we can narrow down the cause of his discomfort and that the new pain medication works for him.

Thank you for the prayers for his central line and the bleeding issue. The past few days the blood has stopped and seems to be under control for now. This will always be an area of concern, but as of now things look okay. We've also changed the antibiotic that Ethan gets because we believe it's causing the vomiting that Ethan has experience lately. We are changing to a once a month antibiotic for him, so be in prayer that his body tolerates it much better. The antibiotic is necessary to fight off infection while his immune system is so low... a primary concern would be pneumonia.

I was sent a very fun thought today via email regarding Ethan having 12 preliminary matches for the bone marrow transplant. The person wanted to point out the significance of the number 12 throughout the Bible -12 disciples of Jesus, 12 tribes of Israel, 12 baskets of leftover food after Jesus' miracle when feeding the 5,000. 12 is an important number in various areas of God's plan throughout the Bible and what a special number it has become to our family as of late.

I'm sure these 12 individuals have no idea how much our family is hoping and depending on one of them to be the blessing our son needs to save his life. What an awesome thought, that one person can help another person in such a life changing way (literally!). We continue to pray for whoever that special person is.... what a selfless act to willingly allow yourself to go through a slightly painful "surgery" in order to help save the life of someone you've never met. How amazing would it be if someone reading this blog and keeping up with Ethan's situation happened to be one of the 12. With all the people around the world that follow our story, I wouldn't be surprised.

Thank you for all of your prayers, love and support. We are able to function every day and find small spurts of joy because of your caring and thoughtful actions.

1 Corinthians 1:2-4
Grace be to you and peace from God our Father, and from the Lord Jesus Christ. Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

Monday, June 2, 2008

Today's Mood: Thankful

Can I just start by saying how proud I am of our little cutie! You'd think he would be absolutely miserable and cranky (and he'd have every right to be!) with all of the junk that is filtering through his tiny body.... but our little trooper is so strong. He is such a happy baby. Yes, he fusses and can belt out a cry and a scream like you wouldn't believe, BUT you change his diaper or give him a bottle and he calms right down (most of the time).... and that's just a typical baby! He's so wonderful and his attitude is so precious. I understand that he doesn't know what's going on - and I'm so very thankful for that - but regardless, his body IS full of poison medication and cancer and you'd think he'd be so irritable all the time. But he isn't. He's absolutely precious and we cherish every minute with him.

So far, no side effects have surfaced. His bottom is pretty raw, and the fissure tears have been aggravated once again, but he doesn't seem to be in pain. The prayer request for the immediate future is that his central line (the port in his chest) stops bleeding. The port is inserted directly into his chest and there are 2 lines (tubes) that come out. It's through those lines that he gets the chemo, blood transfusions, and how he will get the bone marrow transplant. For lack of better description, that tubing is his "life line" for everything right now. The continued prayer request is that the line doesn't become infected. He's not at risk of that right now, but it does continue to ooze blood and so that means there is an opening at the insertion site and though it is kept covered with bandages, infection can creep in at any point.... and an infected line would make things EXTREMELY complicated! The stitches that hold the line in the chest have developed a scab from all the blood which makes is hard to clean. Please be in prayer that we can get a grip on the situation the next few days that we are here and that the tubes remain infection-free. We are so thankful no other problems have come up yet, and we pray that he continues to remain free of side effects.

Ethan's spleen is still a concern. It hasn't gone down in size, and we really need it to start shrinking. I truly want to avoid Ethan having to have his spleen removed, so please be in prayer that over the next few days we start to see a consistent decrease in size. His liver is slightly enlarged as well, so if they could both shrink up, that would be a huge blessing (and a shock to the doctors).

I will find out more about the progress being made with the bone marrow search on Friday. Out of the 12 preliminary matches, they will search the first 5 for a perfect match. If a perfect match isn't found they will continue until all 12 have been reviewed. They'd then take the closest match they found. I'd love for them to find a perfect match within their first search and then we could move forward with the transplant right away! Since I get updated on Fridays, pray that THIS Friday holds more good news!

Thank you for all of your continued prayers for our little boy! Aside from being extra tired from the chemo today, he's doing well.

1 Corinthians 2:5 - That your faith should not stand in the wisdom of men, but in the power of God.