Wednesday, April 30, 2008

A Wonderfully Ordinary Day

Ethan has been a typical 3 month old boy today.... and it's wonderful. He's just starting to realize that his hands can do things. This morning he tried to stick both fists in his mouth and kept getting frustrated that they wouldn't both fit. It's was too funny. He'd try to push them both in at the same time then he'd start to slightly cry when he was frustrated... then he'd start the process all over again. Needless to say, I was loving the entertainment. I also had a good time watching him as he watched TV on the floor. He kept smiling and "talking" to the people on the screen... it was adorable. Oh how thankful I am for these "normal" and special moments with him.

He continues to take his chemo well at night with me and Adam (it's definitely a two person job, but we've got the hang of it now!). And so far, I've not had any problems with what I have to do for the tubes in his chest. Thank you for praying for those things.

I got the call from the nurse yesterday evening that his good blood cells went up again! Quite a jump in number, too! So we don't have to go back to the hospital for another outpatient visit until Friday (as long as he doesn't get a fever or start acting different in the mean time). What a blessing!

Due to Ethan's immune system being in the "danger zone" because of the chemo, he is extremely susceptible to infection so he can't go anywhere in public except the hospital. I can't take him to the mall, to a restaurant, to church, etc... but I can take him for a drive or walk with him outside. So... tomorrow, we are going for a drive together! Nothing too exotic since gas ain't cheap! But we are going out... mommy and son... and we're going to drive and sing and just enjoy the time together. I realize that he will more than likely fall asleep after 10 minutes of looking out the window, but I don't care... I can't wait! Remember... it's the simple pleasures, right!

We continue to pray for a bone marrow match to be found very quickly and for Ethan's overall progress and healing. Thank you for joining us in prayer for those things.

A friend sent me a devotional this morning via email and the overall theme was that we can relax in faith, knowing that God is able to handle all things without our help. It reminded that fear is the opposite of faith. The analogy it provided was that God doesn't bring you out on a limb, and then cut off the limb. The battle belongs to the Lord.

Ethan belongs to the Lord.

Ethan is not battling for his life.

God is fighting that battle for him.

2 Chronicles 20:17 - Ye shall not need to fight in this battle: set yourselves, stand ye still, and see the salvation of the LORD with you...

Much love to all of you.

Tuesday, April 29, 2008

Our first outpatient visit

Well, today was the day we went back to the hospital for Ethan's first outpatient visit since having been released to go home on Sunday. I had a bag packed for both he and I just in case they said we needed to be readmitted - and because I wasn't sure exactly what might take place. We went in and they weighed him, took his temperature, and asked me how he'd been the past couple of days. I said he's been great - and he has! Smiling up a storm, talking in his own little ways, eating well, taking his medicine, being very active... and so on. They drew his blood and told me that since he's been acting normal and didn't have a temperature, that we could go home again. They will call me later today with the results of his blood counts, and if they are still good, then we stay home until Friday for our next outpatient check up... or if the counts are low, he'd go back tomorrow for a transfusion. I was mildly shocked at how easy it was... and I'm hoping that his good blood cells either stayed the same, or increased even more! I should find out later today either way. But regardless... how wonderful that we got to come home again!

It takes a lot of work to take care of him here at home - especially since he's a wiggly 3 month old - (chemo medicine by mouth once a day at night, antibiotic by mouth twice a day, pushing syringes of Heparin through his tubes in his chest once a day so his blood doesn't clot, changing his bandages once a week - and all the crazy details in between), but I'm so happy for every moment we are able to be here at home as a family. And I am so thankful that God is with me and Adam each step of the way, and that He's allowed us to be so comfortable with everything that our little boy needs of us right now. Ethan has been such a good baby with all of this. Holding him, hugging him, driving with him, watching him smile and pretend to carry on a conversation with him and his babblings... it's such a joy.

I also found out at our appointment today what the next steps will be. He will continue taking this chemo medicine by mouth for the next 3 days here at home, then he will take a break for a few days. In about 8 days from now we will be re-admitted to the hospital so that he can start back on the IV chemo he received a while when we were first admitted. He will stay in the hospital on that version of chemo for 6 days, with a 2 or 3 day observation period to monitor for possible side effects after the chemo stops. Then, if all continues to go well, we'd be able to come back home after that week or so and begin his 'chemo by mouth' medicine again. As long as Ethan kept responding well and remained "healthy" in every other way, we'd continue this process until a bone marrow transplant was ready.

Please be in prayer that the above scenario would go smoothly and that each step of the way Ethan would continue to respond well and show improvements so that we'd be able to bring him home in between and do some of the treatments here by ourselves... like we're doing now. Also pray that when we go back to the hospital, he'd not have the painful side effects(mouth/esophagus sores) or eye swelling that he had the last time he was on the IV chemo.

All in all, I am pleased with this game plan. I love the fact that we can have breaks at home. Still no word back on the bone marrow findings, so continue to be in prayer for that. The sooner we have the donor, the sooner we can get to Boston for the transplant.

As I was driving home from the hospital this afternoon with Ethan, I was so thankful for him. I felt peaceful about things in general. As I pulled up to our mailbox, I noticed a few cards of encouragement for us. Since Ethan was comfortably asleep in the car seat, I decided to read them before I went inside. As I was reading the first one, my mind wandered slightly to seeing my sweet boy playing t-ball one day, with a cute little ball cap and running around the bases... with Adam and I watching and cheering from the bleachers. It's a vision I think of often. But today, as I started to read the next card and the next card, they each held a verse that brought me to immediate tears.... Mark 11:24 "Therefore I say unto you, What soever things ye desire, when ye pray, believe that ye receive them, and ye shall have them". I don't believe in coincidences. I believe in God's divine intervention. Envisioning my little boy playing kiddie baseball one day, and sitting on the bleachers watching him run and play - and then having that verse pop out at me not once, but twice on 2 different cards - my tears just couldn't stop. I felt yet again, that God was listening.... not to anything I was actually saying.... but to my thoughts. And He spoke to me... through the cards of two different, yet equally as special, people with the same verse and theme.... Whatever things you desire, Kasey, when you pray, believe that you have (or will) receive them and you will have them.

I don't understand the reasons behind this trial we're facing, but I'm confident of three things...

1) It is for a grand and special purpose,
2) The struggle is only for a season,
3) And that God answers prayer.

P.S. - To my kindergartners: Michael, Olivia, Antonio, Joey, Paige, Ethan, Simon and Caleb... In case you are reading this message (via your parents!), please know that I love you and miss you very much! I know that you are praying for Baby Ethan every day and I want you to know that Jesus hears your prayers and He smiles every time you talk to Him. Thank you so much for praying for my baby. Continue to be good for Mrs. Rivera, and know that the only reason I'm not with you is because my little boy needs me very much right now. But I think of you all the time...

Monday, April 28, 2008

Simple Pleasures

I have a framed "saying" on my wall in the living room. It says, "Seek out life's simple pleasures". I bought it a couple of years ago on a whim. I didn't really care too much about what it said as much as I cared about the fact that the colors matched my living room layout. So up on the wall it went. As Ethan and I were sitting in our comfy recliner this morning (at home!), watching TV, I happened to look up at the words in that frame. All of a sudden those words ring true to me. Seek out life's simple pleasures. I got to be at home with my husband and son for the first time in 19 days. Seek out life's simple pleasures. My sweet boy slept for 7 hours last night. Seek out life's simple pleasures. I've changed his outfit 3 times today because of diaper accidents (I realize that doesn't sound like a pleasurable experience, but I was able to do it in his own nursery, with access to all of his clothes and realized he could wear some of his bigger outfits now!). Seek out life's simple pleasures. I got to lay Ethan on a blanket on the floor and play with him. Seek out life's simple pleasures. I got to see my husband head out to work this morning. Seek out life's simple pleasures.... thank you, Lord for those moments (and the many others) today.

I wanted to share something else with you as well...

Over the last 4 days I have prayed a small prayer for Ethan... "Lord, he is in Your hands today. Take care of him like only you can, and surprise us with something good today". And each of the past 4 days have had their own little surprises for our family. The first day I prayed that prayer the doctor came in to give me the status of Ethan's good cells. They had gone up. On their own. No transfusion. The next day of my prayer, the same thing happened. His good cells went up in number. On their own. No transfusion. The 3rd day I prayed that prayer, I was surprised with the news that we could go home. When the doctor came in yesterday morning to say we could go home for a few days as long as I felt comfortable continuing his treatments myself, I asked about his blood counts for that day. He said they had gone up again. I said "Well, that's great! That means the medicine is working, right?"... To which he (the very doctor who initially thought my idea of a miracle was naive) said, "Either that, or you're getting your miracle". I just kind of smiled and continued to change Ethan's diaper. I didn't really pay attention to the weight of what he had just said... until now.

"Either that, or you're getting your miracle."

Tears stream down my face now as I let those words sink in. You try to keep your faith strong as you fight off the "what ifs", and you believe for a miracle... but sometimes you think, what if I'm not believing in faith/praying hard enough.... what if... what if... what if.

And then God decides to remind you of Himself. It may be subtle. To the point that you might miss it if you're not paying attention. But He reveals Himself and reminds you that He is listening.

I wish you all could really understand how deeply grateful we are for your encouragement prayers. I am convinced that words cannot possibly convey... I wish you could see the tears filling up my eyes and staining my cheeks as I sit here and comprehend how many people... friends, family, and strangers seek to encourage and pray for us every day. You have blessed me. More than I can even tell you. You have been God's voice to us. Thank you for that. And thank you so much for continuing to believe in prayer for a miracle healing in our baby's sweet little body.

Spare our son, Lord.... Thank you so much for the progress he's made thus far.

P.S. - Alicia and Linsey, I can't thank you enough for this past weekend. You don't know what it did for me. Thank you so much for your friendship.

Sunday, April 27, 2008

The man behind the blog and an unexpected surprise...

Aside from the use of certain words in my blog postings like "we", "us", or "our"... you haven't really heard from the man behind the blog who is known as my hubby and Ethan's daddy. So allow me a minute to express how proud and thankful Ethan and I are of him.

Since the night we found out Ethan has leukemia (19 days ago) our lives have certainly changed. And though you only hear from "Ethan's Mommy" in this blog, I wanted to take a minute to shine some light on "Ethan's Daddy".

Since I've known Adam, I've thought he was the most honorable, loyal, diligent, funny, caring, disciplined, and thoughtful man I'd ever met. And in our 3 years of marriage, I have seen those characteristics stay true, and I've seen even more. I knew that Adam was a strong man. Among all of the other qualities that I mentioned, he has the type of endurance and steadfastness that you can't often find in a person. I point this out, because since we found out about our baby having leukemia, nothing about those qualities in Adam has changed. His tenderness towards Ethan is precious, and his strength/endurance/diligence to keep the rest of our lives afloat while I am at the hospital all day leaves me so grateful. We both have our moments of reflection and sadness about what our little family is going through, but he continues to get up every day, go to work, make sure our bills are paid, make sure that my needs are met as best they can be, and so forth. His nights are later than they used to be, since he commutes to the hospital right after work, and stays until I fall asleep.... but he's still him. He's not jaded, grumpy, angry or discontent. He's wonderful. And I'll stop now before I embarrass him anymore, but I just wanted you to know that there is an amazing man, husband and dad - behind the blog.

I do also have an Ethan update! He has been taking his chemo medication (by mouth) perfectly each night. Thank you so much for praying! Also, his blood counts over the last couple of days have gone up (which is a good thing!). Since being here, his good blood cells haven't gone up at all without a transfusion... they've either stayed the same or gone down. Well, the last 2 days they have gone up without a transfusion at all! It's a good sign that the medicine is working, and a good sign of continued answered prayer. So basically, he's not getting any type of "intervention" here at the hospital right now, except his medication at night. SO.... we get to go home today! They've trained me on how to give him his chemo at night and how to flush out his lines/tubes in his chest, so we're all set with that. We have to come back on Tuesday for a blood check, and if he's still good then we can go home again until Thursday. That process would continue as long as he has no fever or did not need a blood transfusion. We could be re-admitted at any point, but I'm so happy to have some positive news right now that we can be at home a few nights a week as we continue to wait for the bone marrow transplant to be ready. They've not updated us about any potential matches yet, so continue to be in prayer for that. But at least for the next two nights - mom, dad and baby will be at home together! Pray that we have no complications with his tubes or his medication while we are at home.

In everything, give thanks....

Friday, April 25, 2008

Small Joys

Thank you for praying about Ethan's "medicine issue". Last night ended up being a successful night of medication. I say, "ended up being", because at first it was a mess.... literally. We tried the syringe thing again (which was the first way we tried to give him the medication on the first night). I have never seen him shoot/spit anything out of his mouth so fast! All of the medicine ended up all over his shirt. We had to call the pharmacy to get another syringe of medicine and try again. The chief nurse then came in and (after adding cherry syrup) gave it to my boy quite easily. She gave him a little at a time, and between her breaks I gave him a bottle nipple full of sugar water. It all worked beautifully. Not one single tear, not one single peep! We were all a lot more relaxed after that. Let's hope the next 7 nights go as smoothly.

Today is going to be a fun day for mommy and son... well, probably more so for mommy. Being at a children's hospital, they have a lot of interactive activities, toys, entertainment for kids who have to stay here. Well, obviously Ethan is a bit too young for basically all of those things... but I was told about some fun things that I can do with Ethan that are actually really special. Today one of the ladies from the Creative Child Dept. (here at the hospital) will be bring some special type of clay so that we can take a mold of Ethan's feet. How cute is that! I'm not quite sure what he will think of it, but I know I will love it!

You don't consider it "normal" (by way of understanding or comprehension) that you child has a life-threatening cancer, but I am so thankful at how "normal" Ethan is in every other way. His personality still shines, his smiles and sounds are absolutely precious, he loves to look at the mobile on his crib and crack himself up, he still eats well with a bottle (and has a healthy appetite!), still likes to be rocked and cuddled, is still meeting all of his other developmental goals for his age, and still likes to cry mad tears when he wants your attention/to burp/to eat.... this disease has not robbed us of continually enjoying our sweet little boy, and has not robbed him of just being himself.

What a special blessing that is... every day.

"He is able for the hardest occasions. He loves the hour of extremity. It is His chosen time of Almighty interposition" (excerpt from Springs in the Valley).

Thursday, April 24, 2008

Thank you so much for helping us celebrate Ethan's 3 months of life yesterday by way of your comments and emails. God is using each of you to remind us of His love and compassion for us... thank you for continuing to be His "voice".

We found out yesterday that neither Adam nor I are a match for Ethan's bone marrow. We are each 1/2 of a match (which is good proof that we are his parents!), but not a whole match. Continue to be in prayer that a donor is found easily and quickly.

It's been 2 days since Ethan has started this new round of treatment, and what a struggle it is! The medicine is not really a "cancer" medication. It's really a drug used for adults with severe (very severe) acne. However, some research somewhere found that this particular drug actually helps kill off the bad cells in JMML patients. The tricky thing is that this medication only comes in capsule form. So you have to puncture the pill, squeeze the thick medicine out of it and somehow get Ethan to swallow it. We have decided that it tastes horrible... worse than horrible... because Ethan screams like crazy (turning red and everything!) and moves his body violently every time we've tried to give it to him. No wonder they keep it in capsule form!! The nurse and I tried to mix in a little baby food (applesauce) with it last night, but my sweet little boy wasn't fooled. It was terrible. We weren't even sure he got the full dose! He's supposed to take it like this for 10 days and so far it's only been 2 days.... and what a rough experience each time. I'm not sure the solution, as I will talk with the doctor about it today, but this is supposed to be the "treatment" that keeps him in good shape until the bone marrow is ready. I am not sure how effective it will be if we have the same struggles we've been having of just getting him to swallow it. It's so bad that the residual substance that was in his mouth got on his bottle nipple and he screamed every time he started to taste the nipple. So, of course we replaced it... but then again, it's hard to tell how much of the dose he's actually swallowing. We obviously need a better solution. Tonight we're going to try to mix it with cherry syrup that they have, but I'm not convinced that will work either... though I am praying it does. The little guy needs the medicine... and we need to find a way to get it inside of him without making him absolutely miserable (trust me, it would have broken your heart - if not scared you - to see his reaction last night!).

In other news... I was thinking random thoughts this morning in my state of sleepiness. I thought that I wasn't getting any sleep just being a regular mom to an infant at home... try attempting to sleep when nurses are coming in every hour to check various things going on with your baby AND also having to get up to feed him, etc. Man, I never thought I'd say I missed the OLD version of my sleepless nights. But anyway, I digress... I was thinking random thoughts this morning about the ways our lives have changed in the non-serious areas. How many times have I gone to the doctor's office as a new patient and filled out a 'new patient form' and breezed through all of the questions like... "Have you or any member of your immediate family ever experienced any of the following?" and then there's a laundry list of serious/chronic illnesses. I never give those a second thought... they are always "NO" or "N/A" for me. But now, I will actually have to pay attention and check of "yes" to cancer and/or leukemia. That's just such a strange thought. Or what about those commercials or billboards you see that advertise certain resources that are available for parents of kids that have cancer. Adam and I are one of those sets of parents now. Or what about a bumper sticker that you see on someones car that says "Donate Life" or a license plate logo that says "Cure Kids Cancer". I am a parent in which those things now hold special meaning. It's just funny how your perspective opens up and how your life is changed - even in the little things - when something like this happens.

So if you see a sticker, billboard, or even a blood drive sign... pause for a moment and say a prayer for the families in which those things hold great importance. I am forever changed with regards to empathy and compassion for those who have traveled this road we are on, and those who one day might have to as well.

My continued thanks for your continued prayers. The Lord is using you to help us have the courage and strength to continue each day.

A small p.s. - It's my understanding that you can subscribe to Ethan's blog by using the "Atom" link at the bottom of the this website. You can click on the link called "Subscribed to Posts (Atom)" which will then open an RSS window. In the right-hand column of the RSS window, there are several ways to subscribe to the blog under the heading of "Actions." Apparently, once subscribed, you would get notification whenever I updated the blog. If that's too complicated, don't worry about it! You can still just come check it whenever you'd like. But, in case anyone was interested, I thought I'd pass the info along.

Wednesday, April 23, 2008


Our little man is 3 months old today!
I thought I'd share some pictures of our
time here at the hospital so far.
He is such a cutie....
no wonder all the nurses love him!


P.S. -- They still have not determined whether or not Adam or I are a match for Ethan's bone marrow transplant. Though that would be rare, it is slightly possible... And how wonderful if that were the case! But regardless, continue to pray that they find a match for Ethan quickly and easily. Please also continue to pray that his spleen goes down more in size. And finally, Ethan started his 2nd round of chemo medicine last night. It's a different kind than the last time and he will be on it for 10 days. Please be in prayer that the side effects are minimal (or non-existent!), and that it does what it needs to do with regard to his cancer cells.

Tuesday, April 22, 2008

It's a marathon, not a sprint.

A wise friend shared the above encouragement with me last night (it's a marathon, not a sprint). I'm not even sure she knew that I needed to hear it, but I really did. I realize that in every person's life, you experience good days and bad days. Days of joy and days of sadness. Days of energy and days of exhaustion. Days of triumph and days of defeat. Days of trust and days of worry. Days of contentment and days of frustration. And especially in trying situations, the "hard days" find a way to sneak up on you. The well-known "pity party" grabs your attention and attempts to suffocate whatever peace and understanding you have worked so hard to build up and keep. Needless to say, today started out being a "pity party" day. I should have seen it coming. You can only have so many good days, before the bad ones start feeling left out and aggressively try to jump in the front of the line! When that happens, oh my, let the suffocating thoughts begin.....

I have to be honest and say that after talking with one of Ethan's doctors yesterday (see below post for reference), I was kind of discouraged and disappointed that Ethan's miraculous healing wasn't going to happen the way I pictured. I stopped taking things 'one day at a time' at that moment, and started becoming overwhelmed with the long road that is inevitably ahead of us.

My pity party started with the thoughts along the line of things like my husband and I will be going to church separately over the next many months, so that the other one can stay with Ethan (whether in the hospital or at home because we've been advised that he cannot be in large groups of people due to the chemo's affect on his immune system). Not to mention the days/nights during the weeks that we are currently separated from each other as I am at the hospital with Ethan.

The next thought that received an invitation to my party was the thought that a transplant won't be ready for at least 2 months, and then after the transplant we will need to stay in Boston for another 6 weeks while Ethan is in isolation and recovery from the transplant. That thought brought along a guest with him to my party, the fact that 6 weeks in Boston means more separation from my hubby as he will have to commute back and forth from work in Connecticut to Boston on weekends (aside from some vacation time he can use), more waiting, more sadness as Ethan has to be in isolation, more tears of frustration about everything in general, and so on.

You'd think my party would have reached full occupancy after all of that, but you'd be surprised how many "guests" can be crammed into a small space. Without much warning, the various anticipated struggles and thoughts of what awaits our little family over the next many months, kept coming right in the door. See, even now, I bet you were tempted to join my party and you didn't even have to RSVP!

I have no point really, other than to say a bad day was inevitable at some point, and there will be more, I'm sure. I think it was just hard to realize that this trial is not just about my baby being sick with cancer (which is hard enough), but about so many other things as well. It's also a test for me and Adam in areas of patience, emotional self-control, complete faith and trust, learning to have contentment in the small joys, and temporary sacrifice of certain desires. We understand that... but it's difficult to accept sometimes. Today obviously being one of those times.

BUT, trials and lessons like that aren't specific to just us. Many people suffer for a season... and that's what I remembered... this is only for a season. And when I remembered that, I asked all my guests to leave my pity party. It wasn't easy, because they are very forceful and want me to focus all my attention on them. But the Lord helped me shut the door (at least for now) with these words... "My brethren [Kasey and Adam], count it all joy when ye fall into diverse temptations [trials]; knowing this, that the trying of your faith worketh [produces] patience. But let patience have her perfect work that ye may be perfect and entire, wanting nothing.... Let him [you] ask in faith, nothing wavering.... " (James 1:2-4 & 6).

Lord, remove the clouds and shadows of today. Thank you, that though I am weak, You are strong. Than you that you already have all of the details of the near future worked out for us and that Your surprises are never-ceasing. Help me to just step back and let you execute everything in the best of ways. Thank you that Your love will not let us go....

Monday, April 21, 2008

A More Clear Understanding of the Process

Good Afternoon Dear Ones,

One of the specialists on Ethan's team of oncologists came in to chat this morning (this is a different doctor from yesterday), and explained the "next steps" for our Ethan. He let us know that Ethan's spleen has continued to decrease in size and his blood levels remain in good shape. This makes day two that Ethan has not needed any type of blood transfusion.... which is great. And since this was a different doctor than yesterday, I decided to ask him what the "plan" would be if Ethan happened to receive a miracle and be cured of this disease. He said that even if Ethan's blood showed signs of remission and recovery, they would still move towards the bone marrow transplant. He said the transplant will not really ever be "off the table".

This type of disease requires completion of the full treatment plan, and there's really nothing that would stop them from continuing to move forward - even if he showed great (or full) improvement. In fact, full improvement (no new cancer cells in his body) is really what they want to happen right before a bone marrow transplant anyway. I told him that we were praying and believing for a miracle and he kind of smiled at me and said that I should do whatever I need to do to stay "positive" (I'm sure he thought I was naive for believing he'd be healed outside of regular treatment).

So then I asked, if he DID get miraculously healed, then what would happen? He said we would still continue the maintenance type of chemotherapy (medicine by mouth once a day for 10 days, then take a 10 day break, then start again...that process starts this evening) and do the bone marrow transplant as soon as a donor is lined up and ready. He said that long term survival (after treatment) with this type of rare disease is really a miracle in itself.


Do I still believe Ethan will be healed? Yes!
Do I still believe his healing will be a miracle of the Lord? Yes!

Since this disease is so rare, every step of the process of treatment is so risky, and you're never guaranteed a positive result.... then the very fact that Ethan could go on to live a normal, healthy life IS INDEED a miracle. And that's what I know will happen for him. That's the peace I have.

I don't want to limit how God wants to heal, and it looks like the bone marrow transplant is inevitable (which means we will have to endure the ups and downs of this process for many months to come), so just continue to pray that they find a donor match very quickly and that the Lord's healing would continue to happen in Ethan's body every step of the way.

However God wants to conduct his miracle in Ethan, I am fine with it and I'm excited that I know it's coming!

It is coming. And when that day comes, you all will be the first to know. But, it could be several months down a long, hard road... so keep the faith. Keep praying. And keep feeling our love for all of you!

Ephesians 3:20 - 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.

Sunday, April 20, 2008

In the early hours of the morning...

I had such a sweet time with Ethan this morning at his 3:00 feeding. He had been asleep for 7 hours and was awake, ready to eat... and play. He was smiling like crazy as I rocked him here in our hospital room. I had slept about 4 hours at that point, and actually felt pretty rested. We stayed up for about an hour after he ate just talking and playing. He was so content and so cute. I was talking with the Lord during that time as well, and just felt at such peace that God was going to do a wonderful healing in Ethan's body. I was asking the Lord for a miracle healing. A healing that could not be explained or understood. A true miracle. And I didn't feel silly or foolish in asking for it. I actually felt very calm and almost assured. I asked God to heal his body even before we move towards a transplant. I sat in wonder as I thought about the uproar of praise that would be given to God at such a miracle. I sat in wonder as I pictured the doctors at a loss for words. I sat in wonder as I envisioned taking Ethan 'around town' in his stroller this summer, instead of taking him to another hospital in Boston for a bone marrow transplant.

I sat... and believed.

It is scary to sit here now and publicly write that I know God is going to preform a miracle in Ethan's body, because "what if I'm wrong". But I think that's exactly the type of faith that God wants us to have. Absolute, undoubting faith. A verse that was shared with me reinforces that mindset. Allow me to share some of the passage with you.

John 8:5-10 & 13

"And when Jesus was entered into Capernaum, there came unto Him a certurion, beseeching him, and saying, Lord my servant lieth at home sick...... And Jesus saith unto him, I will come and heal him. The centurion answered and said, Lord, I am not worthy that thou shouldest come under my roof: but speak the word only, and my servant shall be healed. For I [myself] am a man of authority, having soldiers under me: and I say to this man, Go, and he goeth; and to another, Come, and he cometh; and to my servant, Do this, and he doeth it. When Jesus heard it, He marvelled, and said to them that followed [with them], Verily I say unto you, I have not found so great a faith..... And Jesus said unto the centurion, Go thy way; and as thou hast believed, so be it done unto thee. And his servant was healed in the same hour."

Ethan's doctor, the head specialist on his case, just came in to report that yet again, Ethan's spleen is smaller than it was yesterday, and his white blood cell counts were still in good shape. I felt slightly silly, but I told the doctor that I am asking God and believing a miracle will take place in Ethan's body, and that his team needs to be monitoring his blood closely because they could very well start to see a change in his overall blood counts, for the better. I wanted them to daily be sure he even still HAD the cancer before they moved forward with various treatments. He said they monitor everything going on in his body daily, and that if things looked like they were taking a turn for the better, they would certainly not ignore it.


Pray with me for a miracle in Ethan's body even before we move towards a transplant. Have the kind of faith when you pray as if you truly believe it's going to happen. Pray with such faith not only for us and for Ethan, but for your life and your trials as well. God can handle it all... He doesn't work with a "just one thing at a time" mindset.

James 5:15a -- And the prayer of faith shall save the sick, and the Lord shall raise him up.

Rejoicing and believing, daily.

Saturday, April 19, 2008

Continued Blessings

I need you to know something.... each one of you that have emailed, left comments, or mailed us cards, you are so precious to us. I cry humbled tears of encouragement and delight each time I read something from you. When I say that 'words cannot express' what your caring concern and prayers for us means to me - I'm serious. I cannot find words that can truly express how sincerely touched and overcome we are that you all care so much. Please let my feeble "thank you" settle deep into your soul, and know how truly (truly, truly, truly, truly, truly!) grateful we are for you.

As for an Ethan update, the doctor came in this morning and felt Ethan's spleen and was pleasantly surprised at how it has continued to decrease in size! It's still not back to normal, but the fact that it continues to get smaller is such an answer to prayer. His white blood cell count continues to remain in a safe zone, so each of those things mean that Ethan responded well to his first round of chemo. Thank you, Lord! His next rounds of treatment will start next week. As long as his spleen continues to stay out of danger, then he will begin chemo treatments by mouth a few times a week. This round of chemo will not be as aggressive as his 4 days of IV chemo was. It will be more of a long term maintenance plan of treatment, to prep and ready his body for a bone marrow transplant (BMT) in a few months. The preparations for the BMT are currently underway. All of the testing that is involved makes it a very lengthy process. Please be in prayer that they find a perfect match right away. Since it takes so long to determine a perfect match, we don't want precious time wasted on "wrong" matches. They've advised that if they found a perfect match the first time, the soonest we could be ready for a transplant would be about 2 months from now. If they have to go through several people before they find a match, of course, it could be longer before Ethan can get the BMT. That's not ideal because he really needs the transplant as soon as possible for hope of a successful cure (of course, we know God can cure him without a transplant at all!).

Since I'm talking about the bone marrow transplant, let me take a minute to thank everyone who is on the National Bone Marrow Donor list. What a selfless and generous thing for someone to volunteer to do. That very thing is understood to be the only cure for JMML, among other diseases. Let me also thank anyone reading this who has ever given blood or platelets. You may have gone on your lunch break to run down the street and donate at a local drive, and not think much of it. But do you realize, that without someone donating blood and donating platelets, Ethan would not be alive day to day (outside of the Lord's intervention). He gets transfusions almost everyday to help keep his body functioning the way it should. I am so overcome with thankfulness to all of those who donate... you are keeping someone, somewhere alive. What a wonderful blessing you are to some family out there. What a wonderful blessing someone who donated blood, platelets, and bone marrow (many someone's) have been to this family.

I've posted website links at the bottom right of this webpage just for some FYI's in case anyone is interested in learning more about JMML, general leukemia information, or other "stuff" that's related with Ethan's situation.

My sweet little boy, I'm looking at you right now... Ethan, you've only just begun to shine His light.

Friday, April 18, 2008

My cup runneth over...

Surely, goodness and mercy shall follow Ethan all the days of his life!

We just received word that the Mayo Clinic sent back their results and it is officially confirmed that Ethan has JMML! I know it seems strange to be excited about that, but to officially know what our little boy has is such a relief and such an answer to prayer today!

At 7:00 this morning the doctor said that they hadn't heard from the Mayo Clinic on the final results of his diagnosis and they didn't know when they would (potentially as long as another week or two). I then asked you all for prayer that we'd find out the results in the next couple of days.... then, at 11:00 the doctor comes back and said that the Mayo Clinic just called and ruled out all other possibilities! It is 100% confirmed that our baby boy has the JMML strand of Luekemia and they can immediately begin a treatment plan for him until the bone marrow transplant is ready. What a calming feeling to now know for sure. What a joyful feeling to see God answer yet another prayer so quickly!

Thank you! Your prayers for Ethan are doing so much good! What a blessing to have you go through this with us. What a blessing to continue to see that God is actively involved in each step of this process. What a blessing to have such a sweet little boy!

Good Morning

It's 6:15 on Friday morning and I just fed our baby boy. He fell asleep in my arms while the bottle was still in his mouth, so I was able to gently put him back into his hospital crib. And of course, in true Ethan fashion, as soon as I get back to my little bed to rest my head... he wakes up.... and cries. He's laying on me now and just fell back asleep. What a sweet thing. And he is certainly entitled to cry. I think if I were him and had to endure all the junk he has to go through, I'd cry all day long. But our sweet boy doesn't. He's such a strong little man (did I tell you that the name "Ethan" actually means "strong"!). He only cries when he's hungry, or there's a pain from his mouth or his bottom - due to the sores. But we find him so many times smiling during the day (mostly at all the cute nurses... no, I'm not kidding... he's known at the 8th floor flirt!). He's just so precious. To look at him, you'd never know he was so critically ill. That brings a smile to MY face, because he still looks just like he always has. But the reality is, he is critically ill and we are still earnestly praying for the Lord's intervention.

As for his surgery last night, thank you so much for your prayers. They were able to put in the dual central line, which will make his chemotherapy and blood transfusions much easier. I am so thankful for that. His eyes also look a lot better. Still red and lightly puffy, but so much better!His spleen has decreased slightly in size, which is a great thing! Removing his spleen may have to be an option down the road... but the more it shrinks, the more he's out of the risk of it rupturing now.

We will get through this one answered prayer at a time.

And finally, we've been told that we are still waiting for a clinic specialist out of state to finish his/her review of Ethan's blood and bone marrow tests. They are not going to move forward with a permanent treatment for our baby until they get these results back. Adam and I were under the impression we would have heard something by now, but the doc just came in as I was typing this, to let me know that they still haven't heard anything and they aren't sure when they will. Please pray that the expert opinion will come back very soon.... within the next few days! So that we can start treating Ethan's disease, and not just try to keep him "stable". They are not going to do any chemo again until they have this particular specialist's diagnosis, unless Ethan were to fall into a danger zone while waiting.

Naturally, we're just really wanting to know all the details that are involved with Ethan's disease and what our next several months of treatment are going to look like. The sooner they know, the sooner they can start treating him. Please pray that the results the doctors here are waiting for, come back in the next couple of days.

Your caring concern is so precious to me and Adam. I save every single email I get on behalf of Ethan and I will one day share each one with him.

My sweet Ethan... one day you will know how special you are to so many people, and how God has chosen you for a great purpose. I am honored to be your mommy.

Thursday, April 17, 2008

Update for Today

Thank you for praying for our little man. His eyes have improved greatly. He can look around and see whatever he'd like. His eye lids are still very red and puffy, but they are not at all the golf ball size they were last night and early this morning. Thank you, Lord!

He has not been taken down for his surgery yet (it's now 4:30 and he was supposed to go down at 2:30) and the poor thing is VERY hungry... we've not been able to feed him since 8:30 this morning. The Operating Room is backed up and behind schedule, but they keep assuring us he's going to go down soon.

Thank you so much for your prayers.... I will let you know how the results go after his procedure happens (when it happens!). Continue to pray they can get the dual line in his chest, so they don't have to put a line in his arm.

Hugs to you.

Specific Prayer Request This Morning

Please pray for our sweet Ethan's eyes. We noticed yesterday that his eye lids were slightly swollen. The initial thought was that it was a delayed reaction to the chemo. Late last night, Adam picked Ethan up out of the hospital crib to feed him and we noticed his eye lids were HUGE. His precious eyes were swollen shut! I immediately started crying and went running for a nurse and the resident doctor. The thought process was that he was possibly having an allergice reaction to the morphine that he had been getting for pain control. They put some steroid drops in his eyes and gave him Benadryl. Throughout the night, as I got up to check on him, I didn't see much of a change in his sad situation. Now this morning, they are still swollen. He's able to open them, but only slightly. They assure me he's not in pain from the swelling, but possibly frustrated a little when he can't open them. Regardless, it breaks my heart to look at him. The doctors are making their rounds and they are going to come check on his situation... please pray for wisdom. The nurses were treating him overnight as if it was an allergic reaction, but we're not positive that's really the problem. Please pray now that they find the cause of this problem and that they can quickly treat it successfully.... if for no other reason than so my heart stops aching.

Please also pray as Ethan will go back into surgery today at 2:30 to have his central line replaced (thin tube inserted into his chest that they use as an IV for chemo, blood transfusions, etc.) Pray that they can do a dual line this time so that they don't have to do a separate line in his arm and chest. If they can get both lines in his chest he will be a lot more comfortable than if they had to do one in his chest and one in his arm. It is considered surgery, so please be in prayer for all the details involved (putting him to sleep, no infection, etc). He has already had this done before, but the line came out a little bit, so they have to replace it... however, now they can try to put in a dual line (like I mentioned) and if they can, then this whole situation is actually a blessing in disguise. Just pray for him to come out of everything okay.

Much love to all of you.

Wednesday, April 16, 2008

Thank you, Lord for putting this verse on our friend's heart to share with me today. You know I needed a renewed hope this morning. Thank you for the reminder of Your comfort, plan, and love for us.

Continue to strengthen my faith.

Continue to strengthen our sweet little boy.

John 11:4 ...This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.

Tuesday, April 15, 2008

More Information

It's 10:15 on Tuesday night and I'm sitting here in a darkened hospital room curled up on my little bed and reading all the emails and comments that have been left for us by all of you kind and wonderful people. It's in the quiet moments like this (sweet Ethan is sleeping) that I can reflect and be encouraged... thank you for that. I certainly need re-fueling and your words do that for me.

Though I did post a message this morning, a doctor came in just now and further explained to me - in words I can understand - more of what's going on with Ethan. I'd like to share with you a more detailed explanation so that you can know how to pray.

Based on my below message, you understand what type of terrible situation is going on with Ethan's blood. I had mentioned that he was responding well to the chemo. That is a very good thing; however, that simply means the chemo is doing its job. The REAL test comes in the next few days. If Ethan's white blood cells sky-rocket while he's off of the chemo these next few days, then his body/blood isn't truly "responding" to the treatment. If the white blood cells (cancer cells) only respond (die/decrease in size) while he's on the chemo treatment, but go back to their higher levels while he's off of the chemo... then it's considered that he's not really responding well to this type of treatment. Because that would mean that he's only "okay" while the chemo is pumping through his blood. The true test is whether or not the chemo has killed whatever cells it needs to and stops them from reproducing. So the next couple of days are critical in us knowing whether or not this type of treatment really is helpful to him.

I also now understand that the chemo is killing off the white cells (the cancer), but it also attacks his red cells (the good cells) and his plasma. So while on chemo, he will still need the blood and plasma transfusions (on a day to day basis) to replenish the good cells.

All of the treatment he's going through right now is just to keep him stable at this point. The chemotherapy and the blood transfusions are not treating him to "heal" him right now. They are simply keeping him from getting any worse until they can determine a proper overall treatment plan for Ethan's rare condition. They are waiting for a specialist out of state to send his final opinion/diagnosis before they begin a more aggressive treatment plan with the goal of a cure. Right now they are just trying to keep Ethan's cancer from getting any worse.

My prayer tonight is that over the next couple of days Ethan's white cells remain in a "safe zone" while off of the chemo... that would indicate a true, positive response. And, that the doctors have wisdom as they determine exactly what type of intense treatment Ethan will go through over the next many weeks as they get him ready for a bone marrow transplant. I'm also asking for prayer for the sores that have developed in Ethan's mouth, throat and esophagus - a side effect from the chemo. It has been very painful for him to eat today as a result. They've put him on morphine for the pain and that seems to have helped him for now.

Well, this is long enough so I'll end here... and will now try to get some sleep before my little one wakes up wanting to be fed.

Continue to pray for healing. Continue to pray for a miracle. I'm believing. My husband has hope. And together, with you, we know the Great Physician, the all-power God can do ALL things.

Today's Update

Friends and Family,

Today is Ethan's last day of his first round of chemotherapy. He has responded well to the treatment so far... meaning his white blood cells have gone down in number... which is great! He will now take a break from chemo for a few days to allow his body to recover from the intense medicine and then they will start up another round of chemotherapy later this week or next week. These rounds of chemo will continue for the next several weeks/months in order to get his little body ready for a bone marrow transplant. His red blood cells are low today, so they are going to give him another transfusion of red cells and plasma.

They've started the bone marrow process now. It will be several weeks before we really know anything, but for those of you who have said you'd like to be tested as a match, rest assured that if they cannot find a match in the National Donor Bank for our sweet baby, I will 'sound the horn' for all of you out there to be tested!

The doctor explained to me this morning a little bit more of what's going on with Ethan's body. Basically, we all have red and white blood cells. White blood cells help fight off infection in our bodies. They can grow and multiply whenever necessary TO fight infections. The problem with Ethan's situation is that it is his white blood cells that have the cancer. So his system is fighting against itself. The breakdown of the explanation is like this...

1. His type of cancer is in his white blood cells.
2. His body recognizes there is an infection, so (just like white cells are meant to do) they start multiplying, growing and spreading throughout his body to "fight" the infection.
3. The unfortunate irony is that his white cells are what is infected and therefore spreading the cancer throughout his blood, not fixing it.

We still have a very long, tough road ahead of us, but we know God is still holding Ethan daily and He's not finished with this little boy just yet. Our continued thanks for all your comments, emails, cards and MOST IMPORTANTLY your prayers. You will never know the amount of encouragement you have given us.... daily. God is using you to remind us of His love for us. I am so thankful for the Lord's strength and peace right now.... without Him, we'd not be able to get through this.

Continue to pray for the requests I mentioned in my below post. And thank you soooo much for caring and loving us and for spreading the word for others to pray.

Much love and gratitude.

Sunday, April 13, 2008

Praise Report

Friends and Family,

It is very clear to Adam and I that the Lord's mercies are new every morning. Today makes 48 hours that Ethan has been on his chemotherapy treatment to help get his spleen under control and to help attack the white blood cells. As of this afternoon, Ethan's blood labs came back and show that he is responding very well to the treatment. All of the areas of his blood that have been tested today show a stable condition... meaning, no transfusions are necessary today, AND the chemo is doing its job! In light of such gloomy news each day, this piece of "good news" has certainly sparked our hope. It is still a long road for our little chief, but the fact that his body is responding to (and not rejecting) this chemotherapy (so far) brings big smiles to our faces.

The overall prayer request continues to be for a miracle healing in our sweet child. But the more specific and immediate prayer requests are as follows:

1. That Ethan's spleen starts to go down in size, since the chemo is treating the white blood cells. This would take Ethan out of danger of a ruptured spleen - which has been a more immediate concern at this point.

2. That the process for finding a bone marrow donor goes smoothly and quickly. We are starting the registration process tomorrow and the doctor seem positive that we will find a match within the National Bone Marrow Donor Bank. The faster that happens, the faster we can move towards a transplant.

3. That Ethan continues to respond to his chemo treatments so that his body can "accept" the bone marrow transplant in a couple of months. If his body doesn't respond to the current treatments, then his body would not be ready for a transplant.

4. That the Lord continues to provide His strength, peace and provision to me and Adam. I've stopped working to stay with Ethan day/night in the hospital and we pray for God's protection of Adam's job and that there'd be no complications with our insurance.

As always, thank you so much for all your care and prayers. You have been such a blessing to us during this surreal time... the widespread knowlegdge and prayers of Ethan's situation all over the nation truly has us humbled.

Saturday, April 12, 2008

God's Plan is Perfect

God gives us a child to love in our home.
He trusts us to raise but he’s only on loan.
He has a purpose for each little babe,
To grow as He chooses with the plan He has made.
We think that we own them, then we understand,
That God holds them all in the palm of His Hand.
He cares for the sparrow that falls from the tree,
How much more does he love and protect our baby.
And even the trials our children may face,
Are not a surprise to the God of all Grace.
And somehow as parents we can make it through,
Knowing God’s in control of all trials too.
Why does it happen we can’t understand,
But we know we can trust that the Lord has a plan.
Perhaps through the trials that happen today,
Other Christians remember that they need to pray.
Perhaps we will see the Glory that came,
To our Lord and Savior during our pain.
Perhaps some may meet us in Heaven some day,
Saying it was our trial that helped show them the way.
But whatever He chooses we know we can rest,
On the promise in His Word that He knows what’s best.
- written for us by Nancy Gallucci
Wonderful Friends and Family,

We cannot thank you each enough for your continued emails of encouragment, your voicemails and MOST importantly, your prayers for our precious baby boy. Over the next several days, I am going to try to respond to each of you, but in the meantime, please accept THIS email as if I was writing it specifically to YOU. We have read your email, and we appreciate your words and the fact that you have told so many others about our son's situation. I am overwhelmed with emotion and humbled at the thought of all of the people nationwide that have heard and that are praying for our baby. God is so good in that way, and I can feel His strength and peace with me minute by minute.

I wanted to provide another update we received today regarding Ethan. Even though we will not have a final diagnosis until next week they are starting him on chemotherapy this evening. Waiting until next week for an answer before providing treatment puts his spleen at risk of rupturing, due to it's enlarged size, and that's a life-threatening just by itself. The spleen is enlarged because it's working overtime to fight off the cancer cells in Ethan's body... however, that's not really the spleen's job. The bone marrow is supposed to handle that aspect of one's body, but Ethan's bone marrow is not functioning. The chemotherapy will help ease the extra work the spleen is doing and help fight the cancer cells. The hope is that the spleen then reduces in size. He will be on chemo continuously for the next 4 days and begin the plan to look for a bone marrow donor. Then next week have a more definite diagnosis and we can start the rest of the treatment.

They have cautiously advised us that his cancer is more than likely what they call JMML (rare form of luekemia) and is very hard to treat. The have also advised that this will be a long road in regards to his treatment and that it will not be easy. Ethan is at risk every step of the way; however, I'm not limiting my son to those terms. He has been so wonderful throughout all of this so far. He smiles at us, he takes his bottle, and he acts just like he always has. Yes, my little boy (who's not even 3 months old yet) is very sick... BUT I believe he can be healed in an instant and I'm holding onto that hope every day.

Your prayers and your care help to quiet my anxious spirit. Even through the tears, I can feel a peace and a strength that's not my own and I know it is of the Lord. We truly cannot thank you enough for spreading the word of our son's condition and for all of the prayers that have been said because you sent our request to someone that you know.... it's truly amazing.

I was thinking last night as I laid here in the hospital bed about the story in the Bible where Jesus preformed a miracle by turning water into wine at a wedding. And I thought, if He cared enough about that couple's needs on their wedding day to provide a proper drink for their guests.... how much MORE does he care for a young, sick child. I am praying for a miracle here, and continue to ask for you to do the same.

I wish I could better express my gratitude for your love and support, but know that we are truly thankful for and continually encouraged by you.

I'll continue to be in touch....

(April 11, 2008)

Update on Ethan

Hello again,

First let me say thank you to those who have sent us an email or a phone call. I'm sorry I haven't had a chance to respond to you individually, but PLEASE KNOW that your words have touched mine and Adam's heart and have been very encouraging for us. Word has spread of our precious baby's condition and the amounts of people praying are overwhelmingly touching to us.

One of the specialists on Ethan's case came to see us about what they know so far... and unfortunately, the news wasn't good. Ethan is a very sick boy - though you can't really tell by looking at him... he still looks just as cute and adorable as ever. But, internally we have a different story. His blood and possibly his DNA is just very diseased, and the rough news is that the most common form of luekemia found in children is NOT what he has. He has something that is very rare and uncommon. They have sent his blood work to the Mayo Clinic, a speciality hospital in San Fransico, Philadelphia and Boston. They are organizing a team of experts all over the country to help properly diagnose exactly what this is. The good news is that whatever treatment is determined, can be done here in this hospital, but we still do not know what that is right now. They've told us that we probably will not know exactly what strand he has until this time next week, which means they can't do treatment until they know for sure. In the meantime, Ethan will continue to receive blood transfusions and antibiotic. They are also watching his spleen since it's so enlarged.

We are trying to remain calm and be strong, and not let our minds wander. But we know that as of right now, things do not look good (they've been very honest with us about things). But, we've not given up on our little trooper, nor have we given up on the Lord and His plan. I refuse to let go of the peaceful hope I have that Ethan is in God's hands and the Lord needs this to happen right now because of a greater good He wants to accomplish. Knowing that, is a great source of encouragement to me, because I know God wouldn't allow this if it wasn't absolutely necessary. It's still hard of course, and the tears are sometimes unable to be stopped.... but I have hope.... we have hope.

I will update as we know more.

(April 10, 2008)

Urgent Prayer Request for our Son


I am asking your help in praying for our sweet, little 11 week old son, Ethan. After taking him to the doctor yesterday for what we thought might be a cold or virus, we were sent to the local children's hospital for bloodwork. Everything that happened after that can only be described as indescribable shock. We were told that Ethan's white blood cell count was dangerously high, his blood platelats dangerously low, and his spleen was enlarged. He was in fact a sick boy, but this was much bigger that a cold or virus. After further tests, they called in a specialist to let us know that they were 98% sure Ethan has Luekemia. We were immediately admitted into the hospital last night and have been here ever since... as Ethan has undergone more tests (bone marrow, spinal tap, etc).

We are now waiting to hear back on the results from the tests he's taken today to confirm what type of Luekemia he has and what our treatment plan will be (chemotherapy, etc). Needless to say, Adam and I (as are the grandparents and other friends and family) are in a state of emotional shock. You think your precious little baby might have a slight cold, and you then hear the words CANCER. You just can't describe how you feel and what you're thinking because you're just overall... numb. We are extremely blessed to have our parents here and to have such a strong church family. Prayer chains immediately went out to everyone in our church and surrounding churces and I can honestly say that Adam and I can feel God's peace and strength even now as we wait to hear more about our precious baby.

I haven't had a chance to call all of you because there has just been so much going on, but I was able to get on email here for a minute and just want to ask you to pray for Ethan. Pray that they find out exactly what is causing the disease in his blood and that the treatment will be both effective and fast. They've advised that he will probably be here for a few weeks - possibly longer - but we know that God can change anything and we are praying for a miracle.

My most sincerest thanks to you in advance for your prayers. I will try to get online again soon and send an update when we know more. We can feel God's peace, but it's still a very sad time to see your baby go through what he's had to go through yesterday and today.

Please pray for my son....

Tearful, but hopeful.

(April 9, 2008)