Thursday, July 31, 2008

ethan's treatment plan

First let me say thank you so very much for your prayers. It was a long day, but a productive one. And Ethan was perfect the entire time. We left for Boston at 6:00 in the morning and arrived back at our front door at 5:00 that evening. The hours in between all kind of run together in my mind right now... but I still remember all the important stuff. I was taking ferocious notes!

The conversation with Ethan's transplant doctor went well. She repeated several times how she battled in her mind for several hours on the absolute best treatment protocol we should follow for Ethan that would best ensure a decreased chance of relapse and the most effective way to rid him of all the current cancer cells that are in his body. I was comforted by her diligence as I knew God had been giving her the wisdom she needed to truly help our little boy. The final decision was made to include radiation as a part of Ethan's treatment plan. We knew back in May that this could be a possibility, though we were hoping to avoid it. However, with his enlarged spleen and liver, chemotherapy alone would not fully kill off all the dormant cancer cells and if any should in fact linger the chance of Ethan relapsing in a few months are that much higher. With radiation, the likelihood of fully attacking those dormant cancer cells hiding in the spleen and liver and any other areas of Ethan's body are extremely better, and with a much higher percentage than chemotherapy alone. We accept this decision, and agree that it is really the only option for him, though it was hard to hear at first all the long term side effects that could affect Ethan in the future....

We knew the possibility of him becoming sterile due to the radiation. However, some experts believe that this is more likely to happen in older children than in babies. At Ethan's age, his "reproductive system" isn't fully matured/developed and therefore it isn't a guarantee that babies like him who endure radiation would become sterile. And with the advances of infertility already made available, the expectation is that in the years to come they'd be able to do much more to help couples overcome such an obstacle.

Kasey, your faith should not stand in the wisdom of men, but in the power of God.

Radiation also stunts growth and has the potential to create mild learning disabilities. We have no reason to believe that with giving Ethan extra attention in his early years, any learning disabilities couldn't be resolved. As far as the stunted growth is concerned, they estimate Ethan will be somewhere between 5 feet and 5 feet 5 inches tall due to his radiation treatment. At first, I don't think Adam and I were quite sure how to process hearing about this part. Not that his being smaller than he would have probably been (his daddy is 6'2!) is a big deal in the grand scheme of things, it's moreso that the radiation doctor initially said "he'd hopefully be in the 5 foot range". As if to imply that he could end up being shorter than 5 feet. She quickly told us that there's no chance he'd be only 3 or 4 feet tall as she saw the panic fall on our faces. They said we have every reason to believe he'd be within an acceptably normal range, but he just might not be as tall as he could've been. I think Adam was secretly hoping to have dunk competitions with Ethan when he's older, so I will secretly be praying that he blows all the statistics away and hits an unbelievable growth spurt when he hits puberty!

Kasey, your faith should not stand in the wisdom of men, but in the power of God.

Radiation can also cause cataracts to develop in children. Often times, cataracts are in places that do not obstruct vision, and therefore do not always require surgery.

Kasey, your faith should not stand in the wisdom of men, but in the power of God.

Those are some of the radiation details. If I explained every piece of information of every step involved, this post would go one for about several days. So, I'll skip ahead to the layout of the treatment plan.

1. This coming Monday, we get admitted in the afternoon. Nothing big happens on this day, except that Ethan will get a transfusion of platelets as they have dropped in number this last week.


2. Tuesday, he will start 2 rounds of head-to-toe radiation (lasting about 15 minutes each, one in the morning and one in the afternoon) and this will continue through Friday. Please be in prayer that Ethan will not have to have anesthia for these sessions. They are going to try to do it without it, and the prayer is that he does well to be content to lay down by himself without too much movement, because otherwise, if he has to get the anesthesia, he won't be able to eat for hours and hours before-hand... and that is just awful for a baby, because they don't understand, are very hungry, and get quite angry. And for mom, it's just miserable!

3. He will start chemo (and other medications) on Saturday and this will continue until Monday (august 11th).

4. And that next day, Tuesday, August 12th, is the day he will receive the cord blood transplant. I'm not sure if I've ever actually explained to those of you who may not know what a bone marrow or cord blood transplant is.... no actual surgery is involved. In Ethan's case, he is getting a cord blood transplant. The blood is from an umbilical cord that was stored in a cord blood registry at the time of a child's birth. This blood is just saved until it should ever need to be used by someone. The donor cells are in the form of blood and the "transplant" is actually just a blood transfusion. The new cells then filter through the body and know exactly where they need to go in order to start growing new cells in the bone (in the marrow). The transplant itself isn't a problematic scenario. It's the conditioning treatment he gets before the transplant (as noted above) that cause the most harm to Ethan's body as it has to essentially "kill off" Ethan's own cells and bring him to a place of complete irradiation, so that the new cells (the donor cells) have an opportunity to grow and replace his blood cells - which have the cancer growing. The weeks following the transplant are crucial as well, as it takes time for the new donor cells to engraft into Ethan's body and therefore he's at various stages of risk until that time.

Whew.... that's a lot of information, huh? And trust me, that's the simplified version! You'd not believe all the detail involved in every single step of this whole process. I could go on, but this is at least gives you an idea.

The first (of many) prayer requests I have for you right now is that Ethan would not need anesthesia for his radiation treatments. Ideally, he'd be napping right at that time and it wouldn't be an issue. But he's not on the same schedule each day. But, if he can just remain relatively calm even if he is awake, for about 15 minutes, then I don't think there'd be a problem. Please also pray for his liver and spleen. Pray for protection of his liver throughout this entire process and with regard to his spleen, pray that it shrinks to normal size.

Oh, and one last thing. They are not using the 5/6 cord blood match they had found. After further testing was done, they found it was not as good of a match as they were told by the out of state institute. Therefore, we will be going with the 4 out of 6 match for his transplant. Obviously, the ideal transplant is a 6 out of 6 match. But Ethan's genetic makeup is quite complicated (thanks to his mommy and daddy) and therefore finding a perfect match for him has been near impossible. However, the doctor feels extremely confident in the 4/6 match. She said it is a VERY large cell dose, which means there's more blood to give Ethan at his transplant and increases his chances that everything will "take". In fact, she said that she'd prefer a 4/6 match with a large cell dose than a 5/6 match with a lower cell dose. Overall, she feels really comfortable with it and so do we.

There is so much more I want to say, but my fingers are about to fall off and I'm sure your eyes are about to pop out of your head from reading so much. So... until tomorrow...

19 comments:

The Drama Mama said...

DONE...and I will continue to pray day-to-day! Praying that Ethan would not need anesthesia for his radiation treatments, for his spleen and liver, and all the days to come in Boston.

Thinking about you, Kasey!

Jennifer Powers said...

Wow, so much coming up. I am praying every step of the way for Ethan and his mommy and daddy!

Many blessings,
Jennifer in OKC

Jennifer Wiser said...

I remember, I know, and I am PRAYING for you, Adam, and Ethan during every step of the journey. If you need anything at all over the weekend, you know how to reach me - any questions, concerns, or just a listening ear, please do contact me. "Confident in this very thing that He which began a good work in you will be faithful to complete it."

Love and Hugs,
Jennifer

shera said...

Kasey

Just wanted to let you know that I'm thinking of you and praying for you and your precious boy often (as are many of the other girls at Faith Lifts).

You know where to find me if you are ever in need of anything!!

Blessings
Shera

Anonymous said...

Whew...you're almost there, huh? A few more days until you all go up to Boston. I've been reading and keeping an eye on your blog since April, and I can hardly believe that the day for Ethan's transplant is almost here. I can't imagine what you must be feeling.

We continue to keep you in our prayers.

BTW... My son is a healthy 11 year old and will be lucky to grow to be 5'7" as I'm only 5'2" and his dad is 5'6". :) Tall, dark and handsome is overrated! Give me short, cute and funny anyday!!!

Our Almighty Lord knows Ethan's future wife. He'll be exactly what she'll need/want in a husband.

Continually Praying,
Jennifer

Moz and Pam said...

Praying for you each step of the way!

Lizzie Fish said...

ethan's doctor sounds amazing. so thankful for her! we will for SURE keep you three in our prayers as usual...thanks for the info. it helps to have the details...even though i know those are just a drop in a very big bucket.
love, the fischers

FalkFamily said...

I will be praying that Ethan will not need anesthesia and praying that you and Adam have more than enough strength for the coming days. As always, praying for total healing for Ethan with no complications along the way.

Lorri said...

Wow Kasey, I cannot imagine. I'm praying for you and your darling boy. God is with you.

In His Love, Lorri Steer

kelly s said...

We are praying for all of you!!

Sharon said...

Oh Kasey....I was so happy to read your post today because everything was good news (to another transplant mom). Everything sure fell in place for Baby Ethan didn't they? I feel good about his treatment plan and this is Ethan's second chance of life. Be sure to sing Happy Re-Birthday to Ethan during his actual infusion. You are going to have a flury of emotions but this is our baby's only cure. I'm just curious that if Ethan isn't under anesthesia, how can they carry out the TBI if he moves? I know AJ had a mold of his body and he would lay in it but I thought they had to be completely still? Please please keep us updated. Is there anything that you can seeing baby Ethan needing? I'd love to send a little care package but not sure of what he likes. Because once engraftment takes place, watch out, he won't be able to stay still!

Sharon
AJ's mommy

Lori said...

Hi Kasey -

Andrea Stewart sent me a link to your blog a while back and I have been keeping up with it and praying for you all.

I live here in Boston and would love to help you out any way that I could - meals, trips to Target, washing clothes, etc - whatever you need. Please feel free to email me at loricgoode@yahoo.com. We'll continue praying for you, Adam and precious Ethan!

Blessings,
Lori Goode

Megan said...

Yes, we will be praying for Ethan and Mommy and Daddy! Wow, Boston is finally here. I have a huge sense of "everything will turn out perfect". I know God will answer our prayers and more. You all will be in our thoughts and hearts. God Bless!
Megan

littleleaps said...

So glad to hear that things are gearing up and that God has led the path for Ethan's New Birthday. Hearing all of the possiblities and probabilities are very overwhelming, but you are right nothing is impossible for God! We praise you, God, because you are so much bigger than our circumstances.
Ethan's plan sounds very similar to Lydia's. Lydia had to be anesthetized, because they made a mold of her body for the TBI. She could only eat for 12 hours straight, then between the two TBI's she had some pedialyte. TPA began about the 4th day or radiation to help her out and she felt less inclined to eat by that day anyway.
Ethan is a very special baby! Keep taking it a moment at a time.

queenoftheclick said...

Kasey - know that God hears you.

My eyes are filled with tears because I can't imagine how much you are going through as a young mother. Stay strong. I'll be praying for you, Ethan and Adam.

Anonymous said...

kasey,
sorry i haven't written in a while. i'm very encouraged by your news. we will be praying for wisdom with the doctors, strength for mom and dad, and calmness for sweet ethan. YOU DO NOT WALK ALONE!
michelle from michigan

Elizabeth said...

We will be praying that Ethan will not need anesthesia and praying for,Mommy,Daddy have more than enought streanth for the comeing days. Stay strong! We are praying for all of you!!!
Love & Hugs
Elizabeth & Family

huntsouth said...

As I've been away from a computer for a week while in SC, I've missed the daily news. What a lot of wonderful adventures to catch up on!
I can't help but be excited about your Boston adventures.
It is so comforting to lay all of the details in the hands of our miracle-working Father. Thou wilt keep him in perfect peace, whose mind is stayed on Thee: because he trustethe in Thee. Isaiah 26:3 God bless and protect you and your testimony as you minister to the city of Boston! Love, Amy

Carrie Comstock said...

Thanks for all of this detailed information. I am praying for all of the specific requests you have laid before us.