Ethan did it!!!

After 935 days, Ethan beat leukemia!

I found myself flashing back to that cold February 13th day in 2004 and the past 2 1/2 years overwhelmed me with tears. I cry now thinking about it all. The treatments that he has had to endure; the endless amount of finger sticks and port accesses; the mouthsores; the hair loss; the fevers; the "it's just a virus"'s; the trips to sedation; the CT's; the chest x-rays; the Parvo, CMV and MRSA; the many bags of fluids hung; the miracle mouthwash; the green walls.

But, I also flash back to the love; the support; the guidance; the nurture; the prayers and faithfulness; the meals; the care and dedication to make sure that our baby was well. Our gratitude can never be repaid. What has been provided to us has been a blessing and we are forever grateful. You all opened your arms to Ethan and loved him as your own. When our hearts ached, so did yours. You felt our helplessness. You held us up when we were tired and weak. Thank you.

I never thought that I would want to document this, but the first photo here is the night before Ethan was diagnosed. He was so weak and tired, he fell asleep on the sofa. It wasn't until after I developed the picture that I realized that his lips were purple from the lack of oxygen from low hemoglobin. The next one is Ethan on his way to his end of treatment procedure. He is such an inspiration and will forever be my little hero.


Ethan, Mommy and Daddy are so very proud of you! You have been such a brave boy! Stay strong, stay well, and let's get to walkin'! Love you my son.

The Beach!

Well, we finally made it to the beach on the East Coast! It rained when we were in Myrtle Beach, but by the time we made it to Wrightsville Beach in NC, it was sunny and just beautiful! Ethan loved splashing around in the water and "chasing the waves". He even found a few seashells for us! Enjoy the video montage!


Ethan's First Trip to the Atlantic!

After the beach, Ethan spiked a high fever, so he has been in the hospital since the wee hours of Sunday morning. He will probably come home tomorrow though- not sure yet.

xoxo,
Kristen

NDSC Convention

Hi folks!

Well, I just got back from Atlanta yesterday. I went down on Thursday night and came home yesterday afternoon. I was attending the National Down Syndrome Congress Convention. This is the time that families, self-advocates, and professionals gather together to share experiences and research regarding Down syndrome. It is an amazing time! There is so much love for our children and there is so much desire to make sure that our children are given the same opportunities as "typical" children. I am amazed each time how much the diagnosis of Down syndrome does not get any of these kids down (no pun intended)! If anything, it gives them a stronger desire to prove everyone wrong. Things may take longer to complete, but you know what? They complete it!

So, even though we have hit some major bumps in the road with Ethan's development, he WILL get there because he is determined and strong-willed! Now, I still have a hard time with the fact that one day Ethan will probably want to move away from home. I was able to meet Sujeet and Carrie Bergeron-Desai; a beautiful young couple who were just married two weeks ago. Oh, and they both have Down syndrome. They live in their own apartment in Rome, NY. It's still too soon for me to imagine Ethan getting married, but when you see the love that "Suj" and Carrie have for each other, I know that it is definitely a dream that I am going to have for Ethan.



There is so much, but I am going to leave the technical stuff to me and leave you with a few pictures. The young man is Steven Sauter from upstate NY. I met him and his parents at the last conference and was lucky enough to see them again. Steven is such a romantic and has the sweetest soul. It is always a joy to see him! I am sure him telling me that I am beautiful didn't hurt either! :-) To see other pictures, you can go to our Shutterfly picture album (if you don't know what that is, then you are going to have to ask).

Happy 4th...a little late!

Well, Ethan came home on the 4th, but we skipped all the celebration. He was way too tired and honestly- I fell asleep at 9:30 I think. No cause for the fever except that he was neutrapenic (low infection-fighting cells). Scott and I have taken turns this week by staying home with him. He does not need to be around other kids with who knows what germs until we know that his blood counts are up! But, he has been in great spirits and getting better at pulling himself to stand on solid furniture like the sofa and his crib! He can get up in a second, he just needs to build the strength to realize that he can stand on his own too! It's a fear thing, I think...

I am going in on Saturday to give TWO pints of blood. Yep, that's the good thing about weighing more than most and being tall! LOL! Please give blood. Please. Without blood donations, Ethan would not be alive and so many others wouldn't either, so please, please, please. I hate needles too, but you get over it when you know that you could be saving up to 3 lives! Ok, off soapbox now.

Pirates 2 opens tomorrow!!! I can not wait! I need a babysitter though...CAPTAIN JACK! I am so ready for you! :-) Oh, and tomorrow is also my friend from childhood's big 3-0 birthday! Happy birthday Jen!

Oh, I have had a few people ask...To sum up: I went to the dermatologist (KIM, YOU NEED TO GO TOO!) and she recommended to have 5 biopsies on some moles. I had 3 of them a few weeks ago and got the results yesterday. I have to have 2 of them completely removed because they came back with moderate risk for developing skin cancer. Nothing to worry about. I will have them cut out and be done. Then next week I go in for the other two biopsies and then wait for those results. Fun times...

I think that is all! Phew!

Sorry it's been a while...

There really hasn't been anything exciting to talk about EXCEPT Ethan got glasses! And, does he look ever so handsome! See for yourself:



Now, don't you agree with me??? :-) He is doing extremely well with them. Scott and I thought that he was going to be pulling them off all the time, but he has barely messed with them! When we ask him in the morning if he is ready to put his glasses on, he just gives us a huge grin and then keeps his head steady so we can put them on straight! He is such a BIG boy!

So now that I have started you off with good news, here's the bad: We are getting ready to take Ethan in to the hospital. He has had a low-grade fever since yesterday and today he has not dropped below 101 all day. He looks puny and the doctor thinks that his blood counts may be low coming off of prednison (steroid) and vincristine (chemo). The good news off of all of this is that we went TWO months without being hospitalized AND in less than 8 weeks we will be done with chemo all together and on our road to full recovery! Keep Ethan in your prayers always. He's one tough cookie, but added support is always appreciated!

Before I go, HAPPY BIRTHDAY DARLENE!!! We love you!


We hope that you all have a great Fourth of July!
Much love to you all!
Kristen

California

We are back home and Ethan was wonderful! He LOVES to fly! He is a little weezy today and his temperature is not as low as we would like it, but he is still in great spirits so we run with it!

Thank you to everyone who came to Ethan's party! He had a great day- even though it rained!!! A little rain didn't slow some of the kids down! They still swam! What difference does it make if you are getting wet from the sky or from the pool, right? Ethan is now hooked up for summer! He got some really cool clothes and some books. He also got a neat race car set that everyone loved and I am sure that Ethan is anxious for us to open the box now that we are finally home! Also in the ultra-cool toys was a pirate ship that Ethan loved to take apart! His fine motor skills are improving! LOL!

We had a fun, yet exhausting time. We still missed a few people, but that's how it goes when you are traveling with a little one! Thanks to my best friend Darlene for hosting Ethan's party and supplying our "apartment" for a few days! Another special thanks to my cousin Erin for her generosity, my sisters for their dedication to bringing us home, and Cinders for being there for us when I had an extremely BLONDE moment!

My dad took me and Scott to see Poseidon. It was our first movie outing in over two years! We enjoyed it even though it really wasn't that long of a movie.

One more special thank you...Jessie. Thanks for pushing out that beautiful baby girl so her Auntie could hold her and love on her before leaving! Congratulations Momma!

I'm forgetting something, I know. Please forgive me- I am beyond tired right now! Thanks again everyone! Love you!

I will post pictures soon!

We did it!

Hi friends!

So, I got the official good news yesterday! Ethan gets to stay at The Special Children's School another year! Amen! It really is where he needs to be, so I am overjoyed! Here is one of the reasons why we love it there!



Look how happy he is with the painting! Mrs. Kris (Speech Therapist & friend)and Mrs. Jill (teacher & friend) said that he had the most fun and was using his switch to ask for more paint! I guess he really used some more paint! Gotta love it!

Ethan has another day on his medicine, so he has been feeling good and even eating pretty good! Let's keep this going! We do NOT want to be sick when we visit home next month!

Hope everyone had a Happy Easter! We send many hugs!

Sorry- haven't updated this week.

Ethan is doing better. He went in to the hospital LAST Sunday for fever and bad tummy problems. He was released on Tuesday only to be readmitted on Friday. He has pneumonia again. Why? He may be aspirating his own secretions. I can not thicken that! I thicken everything else, but that is the one thing I do not have control over. Now, this is just a theory. The pulminologist is still looking into reasons.

Ethan's IGG levels were low, so he got some IVIG (immune globulin) the other day and has since perked up. He may even get to come home today or tomorrow- probably tomorrow. Thank you to everyone who has written and who continues to pray for Ethan! Even though he is so close to completion of his treatment, he is still so susceptible to everything known to man. This is the main reason that I need for him to stay at his school another year!

On a personal note for me- the stress of school has been lifted until June. I am taking a break to concentrate solely on Ethan. I won't start back up until after we get back from California next month. While I was nervous to take such a long break, I think it will be refreshing and will also give me and Scott a chance to reconnect.

My friend and neighbor, Paula, asked me to be in her wedding over the weekend. We found her wedding dress over the weekend and now we have to find the bridesmaids dresses. Talk about inspiration to hit the gym!

I think that is all for now. We love you all!

One more LP to go!

LP = Lumbar Puncture, AKA: Spinal Tap

So, Ethan has had his poor little back poked so many times and it is winding down to a close! Yesterday, he had his second to the LAST LP!!! I was nervous to be in sedation with him yesterday simply because of the last incident. Of course, that was silly of me because there was a HUGE difference- we weren't having a scope down his throat into his wide open airway!

The LP went well. His blood counts are good and the bald spot on his head is being tested for ringworm. They said that Down syndrome kids are more prone to ringworm on the head and that it is difficult to get rid of. I said, FANTASTIC! Yippee for us! *slight sarcasm*. The doctor assured us that it was ok for Ethan to go to school. He has had that bald spot for over a month now and has been to school, so he is fine.

We did get sad news at clinic though...Our dear Dr. Chauvenet (an amazing man with an incredible amount of knowledge) is leaving the hospital after this week. I cried and hugged him. I don't know, we just adore him and we are going to miss him. It is hard to think of finishing up treatment without him or even not having him around when we come back for follow-ups. I wish I had taken a picture of him with Ethan yesterday. So to Dr. Chauvenet- we love you, appreciate you, and we will miss you! Please don't ever change! Thank you for taking such good care of Ethan.

That's all for now- I will try and post pictures later. I took some really cute ones of Scott and Ethan reading last night! Hugs!

Great Weekend!

So, since I rarely get to get on here and brag about good things, I thought that I would take a moment...

You know, Ethan had a wonderful weekend! His eating could have been better, but he was happy and lovey all weekend! He even interacted while I read him a bedtime story last night. We read the Three Billy Goats Gruff. Remember that story? Ethan loved the pictures and laughed when I made my voice go deep for the Big Billy Goat Gruff and he chuckled when I made my voice squeal for the Little Billy Goat Gruff. Ethan usually pushes the book away before I can finish the story, so this was definitely a treat for me too!

Ethan is in to everything. He wants to be UP! He is working really hard on pulling himself up on to things. He has the reach of Inspector Gadget! He makes those little fingers stretch! He is such a joy. He wakes up with a smile and gives the best hugs and kisses a Momma could ever ask for!

Good post! :-)

Thank GOD for insurance!

Check out the "Your insurance saved you" highlight!


YIKES!!!

Well...

Here we go again...

High fever, convulsions, cloudy chest x-ray...We will do another CT in the morning.

Ethan had another fever around 3 am, but Motrin took care of it and he hasn't had a high fever since. He is on Vancomyacin (big guns) and Fortaz. He's been in a semi-cheerful mood.

I just woke up from a nap so I feel a little more rejuvenated and I thought that I would come check in with those who care.

Thank you for caring.
All our love,
Kristen, Scott and Ethan
Rm. 907 (336-702-9907)

Sad and Funny- a little of both

See below for my post I made earlier today- before the observation of irony.

Tonight, while I was making dinner (a rare occasion!), Scott asked me "What happened to Ethan's hair?". I thought that he asked what happened to his hand. Long story short, Ethan's hair is falling out again. A huge chunk is missing from the back of his head. I talked to Jennifer (her daughter, Rachael also has Down sydrome & ALL) tonight because Rachael's hair fell out completely again a couple of months ago. She said that it started in patches but was completely gone by three days later. While this absolutely breaks my heart and I am trying to be strong about this because it is just hair AND we have been through this before AND I know it grows back, it is just another reminder that my little boy is fighting the fight of his life.


Now to end on a funny...Ethan really needs suspenders! When he really gets to moving around the floor, his pants tend to get pulled down. So, ladies and gentleman I present to you- Ethan Faulkner, President of the Future Plumbers of America!

Anniversary...

Today marks the 2nd year anniversary of the day we entered the beginning of some of our darkest days. It has been a long two years, but at the same time it has gone by extremely fast! We look forward to the day that this is all a distant memory.

Ethan has been doing very well. He finished up the Levaquin antibiotic last night, so this week is really going to be an interesting one. We pray that the fever demon stays far away and allows Ethan to continue to gain strength! I will take him in to clinic next week for counts and the follow-up chest x-ray. Fingers, toes, arms, legs, eyes- anything that can be crossed will be crossed that his lungs are free and clear of the pneumonia.

Scott built Ethan a walker out of PVC pipe. Very creative that Scotty boy (as Madison would say!). Ethan gets so excited with the praise that he receives when walking. 2006 will be the year that my baby boy walks!




Ethan will also get to see his Grampa on Wednesday! He hasn't seen Grampa in almost two years! My dad is coming in for a short visit so he can go and visit a friend in Lynchburg, VA which is only a few hours away from us. We look forward to our visit, even if it will be short!

That's it, I think...

Going home soon

Ok, well it looks like Ethan will be released from the hospital tomorrow. He has perked up tremendously and the bacteria has been identified as a strep pneumonia. What is/was the cause? We do not know yet. He will be on the new antibiotics for a couple of weeks and then we will have to have another chest x-ray done in a month.

Apparently, it takes a while for progress to show on scans, so it doesn't do us any good to have it done before we are released. I have been talking to a LOT of doctors over the past few days. Infectious Disease (ID) is clearing him of anything major. We do not need a surgery consult yet because what I originally thought was reflux up from his stomach is actually a nasal region reflux. It's a little weird, but we may need to try an NG tube for feeding to see if it helps and if it does, we may be looking into that lovely G-tube that I have been trying to avoid for a few months.

So, if we come back in a month and the scans still show stuff in his lungs, then we may have to do a lung biopsy, BUT that is a LAST resort.

I swear that I am forgetting something. Both Ethan and I took a nice nap this afternoon. No one really bothered us and I only had to ignore a few phone calls. It wasn't that I didn't want to talk to anyone (well, kind of...I was tired), but more that if I moved, Ethan would have been woken up.

Crazy times...Ethan is going to stay home for the rest of the week and if he does ok through the weekend, we have the ok for him to go to school on Monday. Yeah!

Thanks for checking in!

Brace yourselves, this one's tough...

Ok, well the last thing you heard from me was that Ethan had some CT's and that I was off to work at Victory Junction for the weekend. Well, the CT with contrast showed some definite stuff going on in Ethan's right lung. The pulminologist was then called and he decided to do a bronc (a scope put down the throat and into the airway to gather stuff to culture). I was told that it was a minor procedure done in the sedation suite and it would be just like when Ethan has his spinal taps. Since Ethan has had so many spinals, I was put at ease to go ahead with the original plans of working Victory Junction.

I went ahead and went to VJ and went through the orientation. It was a little past 5pm when Scott called me. I was going to be getting ready to meet my camper in less than a half hour. Scott tried to keep things light, but he knew as soon as he told me what happened with Ethan that I would be leaving camp and heading back to the hospital.

I will cut to the chase...During the bronc, Ethan vomited into his open airway. His lungs and upper airway were filled with pus- more than even showed up on any of the scans. Scott was asked to leave the room and shortly afterward, Ethan coded blue. A swarm of doctors rushed to Ethan's aid, he was intubated and put on a ventilator. Another tube was also put up his nose and down into his stomach. Ethan was now in the Pediatric Intensive Care Unit or PICU. My heart stops thinking of what he went through or even how Scott was feeling when it all happened. I feel like I should have been there- we should have been there together, but I can't take it back.

While in the PICU, Ethan was on a fentanyl and versed drip. One was considered a "paralytic" so he wouldn't fight the vent. Because of the medicine, his bladder could not work either, so a catheter was inserted (thank God he was asleep for that torture!) We have seen a lot of things happen to Ethan over the past two years, but this past experience has to top the list of horrific feelings. The good news out of all of this is: Ethan is so stubborn that not even a little PICU action is going to get him down! And, now we have some definite answers for all of Ethan's fevers.

We knew that Ethan was aspirating his fluids, but even after thickening them, he would still get fevers. Well, his reflux was sending gunk back up into his airway even after being digested. We are going to be talking to a surgeon about a procedure to make sure the flap between the esophagus and the stomach stays shut and stuff can't come back up.

So, Ethan needed some blood while in PICU. All of the massive amount of fluids that were being pumped into his little body made him anemic and his blood pressure was not stabilizing. Another chest x-ray done yesterday morning showed great improvement, so Ethan was taken off of the vent, the tube was removed from his belly and the cath was also removed. He was very swollen and beyond groggy drunk, but he did really well!

I tell ya, Ethan really does deserve a medal. He amazes me with the ability to smile even after the hell he goes through.

Thank you for the prayers, dinners, visits, and phone calls offering support...I apologize if we were not up to visiting today. Sleep has not been in the stars for the past couple of nights. Ethan did not sleep last night and was very fussy. I can't imagine why! Today, he was still wanting and needing to sleep, but he still would not. We got him some benedryl this afternoon and he finally went to sleep, as did I. We got in a few hours and Scott had put a message on the door that we were trying to sleep so no one disturbed us.

Scott and I are feeling better. Of course, with everything that just happened, anyone is going to have a hard time getting me to leave Ethan right now. He looks SO much better, but he still needs oxygen and was starting to peak a slight fever tonight. Sorry, no pictures...we do not want to document the last couple of days with pictures, but as soon as he is smiling again- I will be sure to pass them on! I did get him laughing a little today, but not for long.

I am sure that I am forgetting something, but I just also want to acknowledge my work and Scott's work for being so amazing during this time (as always). I also want to thank those involved with my schooling. I have not been able to even come close to concentrate on it over the past couple of weeks, but I am hoping the next week will bring better things.

We do not know how long we will be here, but FINALLY the doctors are treating things aggressively. I discussed Ethan's chemotherapy with his doctor today. While I am nervous to get him back on it after this past week, I also realize that we have one clear chance to beat the leukemia and this is it. Ethan has had his chemo held so many times over the past year and I just do not want to give the leukemia any more of a chance to come back.

I think that's it- plus Ethan is having a couging spell. Gotta go. Hugs.

Still in...

BIG YAWN!

Ok, so again, short and sweet...

Ethan is still spiking high fevers with an unknown source. BUT, he has had two CT scans. The one for the sinuses came out fine and today he had a chest/abdomen/pelvic CT with contrast to search for a possible fungal infection. He is not on any antibiotics because the doctor wants to see what the pattern is for the fevers- and yes, he had some more fever today over 104 just like yesterday.

Scott made it home just fine. We are so happy to have him home! Scott will be staying with Ethan the next few days since I am working at Victory Junction this weekend.

Now, isn't he so precious?

Hospital- again

I won't make this long- I don't think anyways! Here's the scoop:

Friday: Released from hospital
Saturday: Fever at night
Sunday: Fever again
Monday: Fever again (over 103)
Tuesday: Fever again (104 with Tylenol), chills & misery

After leaving a few messages for the dr. to call me, I call again and say that I am bringing Ethan in. I did, he was admitted. I am not in a good place this trip. I don't know why specifically. I think that it just hurts my heart so much to see Ethan as sick as he is and to not be able to fix it or take it away. I would take his pain in a second if I could. So, that's why I am not in a good place today. I am hoping tomorrow will be better and I think it will be because my husband is coming home! The time that he's been gone has gone by surprisingly fast considering what we've been going through while he's been gone, but I am glad to welcome him home!

That's all- see that was short.

Update with Pictures!

Hello friends! Well, I was able to bring Ethan home yesterday afternoon. We stopped by the school because as we were driving by, Ethan got all excited! He really loves his school! When we got home, we both laid down for late naps and slept way too long, but I guess we both needed it! Ethan is still neutrapenic, but fever-free, so that is why I was able to bring him home. I have to take him in to clinic on Monday for counts. Let's hope that they come up by then!

Scott made it to California fine. He has gone to the family viewing and the rosary. He said that Tia looked good...she had her rosary in one hand and her referee whistle in the other! Gotta love it!

Here's a couple of pictures I just took of Ethan and the before and after pictures from the concert! :-)
Ethan says HI!



Before on the left...After below.

Happy New Year!

Wow, it's been a while since I have posted...my apologies. I hope that everyone enjoyed their holidays! Ours were pretty quiet- we enjoyed the time that we had with friends. I turned 29 on January 2. Last year of my 20's...I am ok with it. I wish I still looked like I was under 30 though! Darn stress! Here's to 2006 being better!

Ethan has been hospitalized twice since the New Year. I am actually posting from the hospital. I "stole" one of the hospital laptops, which is a no-no...all that HIPAA junk. Anywho- we may get to go home tomorrow if his counts come up. He's still neutrapenic, but not by much.

I am now flying solo this trip because Scott got on a plane today. One of our dear family friends passed away last Friday...the 13th. Ethan was dx'd on Friday the 13th. I now hate two things- CANCER and Friday the 13th. Joann was an extremely instrumental member of our family as well as many others. We will miss you Tia! I am so glad to know that Scott is able to be home for Tia's services.

Scott has been such a trooper this trip. Ethan was admitted on Tuesday, but I had to work because I was only working part of Wednesday and then took today off. I had the time planned off because of my birthday present to myself...BON JOVI! That's right, you are jealous! lol! I have been wanting to go since I was young when it seemed that everyone in my family went but I was not allowed to go because of my age. (I'm not bitter...really). That has been the best birthday present I have EVER given myself before! Thank you Theresa for going with me and making sure that we rocked out like there was no tomorrow! WOO HOO!

That's about it for now. I need more time for homework, but hopefully we can go home tomorrow and I can work on it! Oh, by the way...if you call my cell phone and it says that my number doesn't exist or something like that it's just because I can't find the stupid lil' booger and I had the phone restricted just in case someone has it. Pray I find that phone! It has so many numbers in it!!!

I will post some new pictures of Ethan when I get a chance!

Hugs,
Kristen