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.


huntsouth said...

Dear Adam, Kasey and Ethan,
Today is a day for happy (and convicting) tears.
Praise the Lord for the donor matches. We will pray for the right one-the corvette. And why not the 5-speed, instead of the 4?!
Lord, I believe; help though mine unbelief! Love, Amy

Hollie said...
This comment has been removed by the author.
Hollie said...

WOW, thanks for sharing your insight on faith. Your example was perfect...and I'm praying for the corvette for all of you!

Praise God for that match. I am praying that the 5/6 match is sickle cell free and perfect for Ethan...but either way I have faith that God is in control! What huge news for all of you! I know God will be holding Ethan in His hands through all of this! Sending love, prayers & hugs your way!

April R said...

Yes! I just remembered that a couple of years ago a little girl in our church-she was 12, I think, had leukemia. As you can imagine, losing your hair is a BIG thing for a girl of this age. We all prayed that she wouldn't. The nurses at the treatment center told her that in 25 years, they hadn't seen anyone keep their hair. She did! She was also healed. He is in control!

Jennifer Wiser said...

Hi Kasey,

Pray for the corvette, and you can be confident we are too. Hebrews 4:16 says "Let us therefore come BOLDLY unto the throne of grace that we may obtain mercy, and find grace to help in time of need."
I am so thankful for the news of the donor matches. God is so good to provide the help we need. Alex received a 5/6 cord donor. You are so right - God's will doesn't just come in the end result - his will is found during each step of the journey.

Hugs today as always,

Anonymous said...

I was sent a link to your blog near the time you began this blog. I've been an adament reader and kept up-to-date with Ethan's status. I have to be honest that I've been lost for awhile with my faith and I truly feel as if God sent me to you to open my eyes. Your strength and faith is a true inspiration and I pray for your family daily. Thank you for giving me more direction than you will ever know.

Jennifer Powers said...

Hi Kasey. I've been reading your blog for about a month now but this is my first time to comment. Your words have been so encouraging to me. Baby Ethan is so precious and I'm praying for him daily here in Oklahoma. Many blessings to you and your sweet family.


grandma kay said...

Adam & Kasey & Ethan,
WA state is still praying & praising God for all that He has done & is going to do in & through you all. We pray that the BEST donor will be ready soon. We also pray the God will allow the next steps to be problem free & that Ethan will have few if any side effects.
Much Love to you all, Kay Hyaes

grandma kay said...

Adam & Kasey & Ethan,
WA state is still praying & praising God for all that He has done & is going to do in & through you all. We pray that the BEST donor will be ready soon. We also pray the God will allow the next steps to be problem free & that Ethan will have few if any side effects.
Much Love to you all, Kay Hayes

Carrie Comstock said...

Great news about the possible matches!

How has his port been doing?

As always, praying with you.

Megan said...

Praise the Lord for the Donor! We will pray for all your requests and more. First I want to start off by saying that we are human and it is okay to be scared to death about the journey Ethan is taking and will be taking. While reading your blog today it really hit me what this little one is really going through. Being so far away and not being in your shoes makes it very difficult to grasp exactly what you all are dealing with day in and day out. I have to admit I am sick to my stomach and sad also about what Ethan will endure these next several months. Prayer is the only medicine that will give us a cure and healing. You are so correct about Faith. There is so much more God wants us to realize it is hard to even start to understand. Listening to God is where are deeper faith will begin and you sure are plugged in to that. I wish none of you had to go through this and I am so sorry. Keep trusting in the Lord, he will carry all your burdens.
"We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living.We are persecuted, but God does not leave us. We are hurt sometimes, but we are not destroyed....So we do not give up. Our physical body is becoming older and weaker, but our spirit inside us in made new every day. We have small troubles for a while now, but they are helping us gain an eternal glory that is much greater than the troubles. We set our eyes not on what we see but on what we cannot see..."
2 Corinthians 4:8-9, 16-18

God Bless. Sweet dreams.

Anonymous said...

PRISE the LORD for the donor matches. PRAY for the CORVETTE, GOD is so GOOD to provide the HELP WE NEED.. I'm PRAYING that the 5/6 match is sickle cell FREE and PREFECT for SWEET BABY ETHAN... I have FAITH that GOD is in CONTROL! Many BLESSING to baby ETHAN,KESEY,and ADAM.

elizabeth said...

above is my commet to you.