Wednesday, May 21, 2008

Peace

I need to start by saying that God not only heard all of your prayers for us today, but He honored and answered every one of them. Thank you so much for giving us the blessings of your prayers.... as they were a TRUE blessing for us. Aside from the fact that we were traveling to the pediatric cancer center at Boston Children's Hospital today, we had a wonderful day together as a family. Ethan could not have been better throughout the entire trip. He slept of most of the 2 hours to Boston and the 2 hours back to Connecticut. And during the appointment with the doctor he sat in my lap, or laid back in his stroller, babbling and looking about, and smiled repeatedly at the doctor. He was a perfect angel and for a child who does not like to be restricted (he is a very active baby!), he was extremely content today. It was such a blessing for Adam and I to both be able to completely focus on what the doctor had to share with us. Thank you so much for praying for that specific area of concern!

Our morning started off fine, though slightly busy. We had to make a stop at the Children's Hospital here in Connecticut this morning before heading to Boston so that Ethan could get another transfusion of platelets. From there, we headed towards our consultation in Boston. The drive was nice. Adam and I shared some concerns, but overall we just had fun and enjoyed each other's company. However, when Adam and I were driving around the parking garage in Boston, looking for a spot, a sick feeling settled into the pit of my stomach as I realized once again that my little boy has cancer. Of course, I know and have known of his disease for over a month and a half now... sometimes it just hits you right between the eyes all over again. And it did this afternoon. We made our way to the cancer floor and got checked in. I was able to feed Ethan while we waited to be called back for the consultation. As we waited we were able to read over a packet of information that explains a lot of the logistics of the transplant, room amenities for me while I stay with Ethan, etc. The hospital is very nice. It was our first visit there, and we were immediately impressed with the entire layout and the surrounding areas. I was starting to feel a peace come over me as I have been dreading the whole "Boston" thing. I've been mildly depressed about having to "live" there for 2 or so months, away from my home, my husband and all my comfort zones, but... after seeing the actual place, and learning about what areas outside of the hospital I will have access to, I started to really feel comfortable with everything... and that was before we even met with the doctor.

When we finally met with the doctor, Adam and I felt very relieved. Her demeanor and personality immediately put us at ease. And even though she had some tough information to give us, she also was very encouraging and hopeful about Ethan's situation. She was patient with us in answering all of our questions and shared with us all of the next steps that will take place. She was very thorough and earned our trust right away. Without even finishing the conversation with her, Adam and I both felt at peace about moving forward with the direction of the transplant. Yes, there are areas of risk, but we have to recognize that our job as parents is to handle all of the areas that we can, and leave to God the areas in which we have no control. I could go on and on about all of the details, but I'll simply say that we felt such peace today about what we needed to do for Ethan and we recognize that it was through the help of your prayers for such peace and such clarity. Thank you. Thank you. Thank you. I am continually encouraged and blessed by your emails, comments, cards and prayers. This would surely be a long, lonely road for us without your love and support. Family. Friends. Strangers. Every one of you. Even if you've never sent us a card or an email, I'm still talking to you. Because I know many out there read this blog and pray for us regularly, and that knowledge alone gets me through the day.

So... what now? Well, there is still no match for Ethan. Not to say that they haven't truly found one, it's just that they are still in the middle of the search. There are various details involved so it takes a long time. The doctor estimated the transplant would happen in July with about a 2 month stay in Boston afterwards before being discharged back to Connecticut. Due to the dangers and risks involved I would like to ask that you join us in starting to pray even now against such dangers and risks. I am so encouraged by your prayers as, so far, every time I have asked for prayer from you, the Lord has been faithful. I'd like to continue that trend and begin praying God's protection over Ethan in each of the following ways:

1. Pray that they do not have to use radiation as a part of Ethan's treatment. They are hopeful they won't have to, but it is possible that they might. Radiation can stunt his growth since he is a baby and can cause problems with his spinal cord.

2. Infertility is a possible side effect from all of the treatments Ethan will endure. (When the doctor said that, my heart sank and I immediately imagined Ethan having to tell his future wife that he'd not be able to have kids). Of all the things she shared with us, that is the one thing that brought tears to my eyes. Pray that infertility will not be an issue with him and that God would allow Ethan and his future wife all the children they desire.

3. Pray also against a specific side effect called GVHD (Graft-versus-host disease). It has varying degrees of problems, but the most basic way to describe it is that the donor's bone marrow cells attack Ethan's body. It can be in a mild form, or in a very chronic form. Please pray that NO FORM of GVHD happens in Ethan's body.

4. As they are conducting the donor search, though we will be happy with whatever match comes available for Ethan, the BEST scenario of a match for him would be a younger (age 20's or 30's) male. Please be in prayer that Ethan's donor fit that description.

5. Please pray that the match is found quickly and that transplant can happen before July... basically because the sooner the better for Ethan's sake. And continue to pray that the cost of the search does not exceed the amount allotted for it.

6. Pray that Ethan has no complications with the transplant (there is a 10% chance that a patient could die during transplant) and that we are able to come back to Connecticut within 6 to 8 weeks following the transplant and not have to stay in Boston longer due to complications or infections.

7. Pray that Ethan continues to respond to the chemo and the "at home" treatments he currently undergoes, as that keeps him stable as we wait for the transplant. Pray against infection, fever, that his body doesn't build a resistance to the medications and for the bad cells stay low and the good cells stay high... and that we continue to be able to come home in between chemo treatments as that is a special "family blessing" for us.

8. Pray against the severe mouth sores (mucositis) that result from the transplant.

9. Pray for Adam and I to have the health and strength we need to endure these next 9 to 12 months.

I know this is a lot to remember and a lot to ask for your help in praying... however, these are the biggest areas of concern for our little baby boy and I only ask for your help in the most humble of ways as I know I need help in lifting up each of these specific areas. I believe prayer is needed even now for the protection Ethan will need in the near future. I'm sure there will be other requests that pop up, but these areas weigh the heaviest on my heart at this point. I have such a wonderful peace in knowing that all of us can bow before the throne of God and ask for His mercy, provision and grace over his precious child, Ethan, who IS fearfully and wonderfully made. As horrible and unfathomable as this whole situation is for us as parents, Ethan was created by God. Ethan has a purpose and I do not believe that his purpose is short-lived. God, who has the ability and the love to save my son and give him a life of special meaning here on earth, WILL hear our prayers. He already has. And has answered every one up to this point.

Thank you, Lord. Thank you for your clear peace... and even your joy today. Continue working your miracle in our baby boy. Continue to work your wonder in all of us.

p.s. - I have to take Ethan for another outpatient appointment tomorrow (Thursday) afternoon to check his red blood cell count. If they are too low, he will need another transfusion on Friday morning. Please pray for a positive jump in his number of red cells tomorrow!

Thank you again for all the prayers today. We felt every single one of them.

We love you all.

20 comments:

grandma kay said...

Adam & Kasey,
I praise God for the peace that you had today & for the answers to prayer so far. I am thankful also that your day went well. You are all such a blessing. I spent the day wondering & praying about the next time that we would hear from you & how God answered all the prayers for today. May God continue to bless you as you all bless us with your victorious story.
Kay Hayes

JenWiser said...

Hi Kasey,
Just wanted you to know that I thought of you and prayed for you all - all day today. I've been checking the blog waiting to hear the outcome of the day. I was so pleased to know that the day went smoothly despite the circumstances. What a Great God we serve! You haven't been far from my thoughts and prayers since I started reading your blog just last week. Every time I see my precious JMML survivor running around here, I know God can do great and mighty things far beyond what we can ever ask or think. It will be two years ago this July that our Alex had his BMT. I know and can feel each and every concern and prayer request that you shared for I've felt them all the same. The memories are still fresh and I can completely remember the same conversation that we shared with our doctors to discuss the BMT. Remember God is never farther away than a cry out to Him whether in the tears you cry, the words you speak, or the heartache you feel, give them all to the One who can continue to give you the peace that only He can provide in a time like the days ahead. You can call, like I said, any time you want or need to. I would love to share with you anything that might be of help to you all.

Jen Wiser

Karen said...

Dear Adam and Kasey,

I thought I had had a difficult day today...until I read about your day! Believe me, if nothing else, everyone who reads your daily reports can't help but go away praising the Lord for the comparatively little problems the rest of us have! You truly are going "through the fire".

Our fifth graders pray for you daily and ask for daily updates about Ethan. Thanks so much for this blog...I love feeling like I'm right there with you as I read your "heart thoughts".

Love in Christ,
Karen from ECA

Linsey said...

I am glad God blessed you with a good doctor. It can make the world of difference. Glad things went well and will be praying. You enjoy that sweet baby!

Anonymous said...

I have been thinking about ya'll all day! I am glad the trip went well and Ethan did good!

Amber King (Spradling)

Anonymous said...

Hey Kasey,
Have ya'll started cereals/oatmeal yet? Is Ethan allowed to eat more whole foods by mouth? I was just thinking...iron is good for RBCs and baby oatmeal is wonderful! Just a thought!

Amber King (Spradling)

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

Hey!
You don't know me, but i attend church with some of your relatives, and have been reading your blog from the very beginning.(an e-mail was sent out to our whole church) I was praying for you and Ethan today as you went to Boston. So glad to hear everything went well. I will continue praying over these next several months. Gods grace is sufficient!
~Kylee (Dallas, Tx)

Anonymous said...

Praise God for all of our answered prayers! I'm so encouraged. Thank you for letting us share in your blessing of answered prayers. Thank you for taking the time to write specific things that are on your heart to pray for. God is so good, and He loves to work when no one and nothing else can. praying for your day tomorrow and for your sleep tonight.
michelle from mi.

The Rivera Family said...

Dear Kasey,

Thank you so much for updating us so quickly. George, Matthew, Natalie, and I will continue to pray for your specific areas of concern. We join you in giving thanks and praise to our Lord for the peace He gave you today. We are so thankful that everything went so smoothly at the hospital and that you enjoyed a nice family day. Enjoy your time at home.


Ephesians 3:20-21 Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen

Anonymous said...

Kasey,
Does the bone marrow donor have to be a specific blood type? If you know, could you post it. It would be great to encourage young Christian men to learn more about being a donor, especially to be of potential assistance to Ethan.
Thanks for posting the details of your day, I checked the blog not expecting anything and was so glad to get the update.
A friend you haven't met yet.

Janelle & Ella said...

I felt such a huge wave of peace and relief when I read that you and Adam felt clarity and peace all day! I don't know why I am surprised. It is so evident that God is guiding you each minute through this entire situation. So glad you felt good about today!!

dave said...

Adam & Kasey-
Thank you for the specific prayer requests. It helps me to guide my prayers for you both & Ethan. We had prayer meeting last night and everyone at church lifted up your baby boy. Tara, Logan & I (Wyatt too) pray for you daily.

Dave Marine

Marge said...

PRAISE GOD.
I woke up about 3 this morning and check to see if you had written anything. Then the first word I saw was PEACE. That was so great to see; because I was a little scared that it might not have gone that well but when my eyes saw Peace at the Top I was
Thrilled.

I will continue in prayer for your family and for the things concerning Ethan possible side affect after transplant. God can keep any of them from happening and I pray he will.

Marge

Anonymous said...

Adam and Kasey,
We are so thankful that you had such a peaceful day. As you have seen many times the Lord is in control of it all. We will continually pray for the requests and also for you and Adam. May you have a restful and wonderful day with Ethan.

Michael updates me on baby Ethan everytime I pick him up from school. Eventhough you may not be at school, you are thought of and missed often.
Love Sharan

Carrie Comstock said...

I am so pleased to hear how well everything went in Boston!! Praise the Lord. Thank you for the specific requests...continuing to stand with you in faith and pray!!

Hollie said...

I am praising HIM for such a wonderful appointment and the peace about the doctor. PRAISE GOD!

Praying for all the specific requests for the transplant and everything that happens in between!

You and Adam are amazing parents!!!

Amber said...

Kasey,
My husband and I are friends of Jason and Keri's and I've been reading daily about Ethan. You've been such an inspiration to me and have even renewed my faith and restored my hope. I can't believe how attached I've become to a family I've never met and I pray for you all daily. Also, thank you for the information about the bone marrow registry- me, my husband,and my mom all signed up. I'm sure the perfect donor is out there for Ethan. He's a beautiful baby and thanks for letting us become part of his life.

Kay Lynn said...

Hey Cuz,
Just wanted you to know that I have been reading your blogs (I get caught up throughout the week on Fridays) and wanted you to know that I pray for Ethan everytime I pray for Branson. I know Aunt Kari and Uncle Jason are coming up this weekend, so I wish you all the best this weekend and hope you all have a great time with one another. I love you more than you will ever know and you all are #1 at the top of my prayer list! Thank you for your strength and encouraging words as they are truly a blessing to everyone who reads! You renew my spirituality with every word and phrase you write on Ethan's blogs! I am so proud of you. You are a wonderful woman and I am sincerely blessed to call you my cousin!!!

Love Always,

Kay Lynn

Sharon said...

Hi,

I've been following your page for some time now and kept little Ethan in my daily prayers. I read this post and I was taken back to the day we had our BMT conference at our hospital.

A little about our story. My son was diagnosed with infant leukemia a couple days before he turned 4 months old. He underwent 3 rounds of chemo and was considered to be in remission by day +7 per BMA. He continued to do well, never once spiking a fever, even at nadir. We were told he would and we were inpatient from diagnosis (Aug 2007) until discharge Feb 2008. It was not easy!

You mentioned that they have not found a match for little Ethan. Because my son is half mexican/half taiwanese, they felt finding a match for him would definitely be challenging. We ended up finding a 5/6 cord blood match. Is that something your hospital is willing to look at or because of the severity of the disease, it has to be bone marrow?

I also wanted to let you know that my son had his transplant December 3, 2007 and did wonderful. He engrafted a lot sooner than they the regular CBT's but they seem to beleive it had alot to do with the cell dose amount he received, a whole 25cc's, which was alot. It was after his transplant that he had his first fever spike with negative cultures. They say with foreign cells injected into your body, your body reacts to it by spiking a fever. We did encounter a very bad infection about 20 something days after transplant and had to get his double lumen broviac pulled. As for mucositis, my son didn't have any visible mouth sores, although he had a couple on his bum, now we can only imagine the insides because he stopped eating very early into transplant. Since he was strictly on breastmilk I didn't want that taken away from him so before his transplant, although he was still eating, I requested them put a NG tube down because once mucositis was present, it wouldn't of been done. One of the things that helped was we kept his gut working, we fed him continuously at one point 5cc's a hour just so when he was starting to heal it wouldn't of been such a shock to his body.

My son also has no GVHD to date. They say with CBT's the chances of GVHD are a little slimmer, being that the cells in cord blood are new, immature, unexposed, etc. They don't know where they truly belong hence a longer engraftment period also.

My son did have TBI (total body irradiation). He had 3 days 2 sessions each day. Although the side effects of radiation is long term but we were willing to face that challenge when it came because we were willing to do anything to get him in remission and keep him in remission.

One thing I was told was although infants battling leukemia had a poor survival rate, I never gave up and never lost my faith. Baby's are very resilient, very. Believe and your faith is amazing! I'm so proud you have never wavered.

I know what your daily life is like, I know your fears, your concerns, your happiness, your thankfulness, I know what you are going through. I just hope that with what I have shared with you today, I have helped in some way. Even though I know nothing about JMML, we share a lot in common, our baby's battling leukemia. Please email me if you'd just like to talk, vent....I understand!

Sharon Ramirez
chinagerl61@hotmail.com