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

Merry belated Christmas!

I apologize for not sending out Christmas cards...Ethan kept us quite busy this entire year. Maybe next year will be better! Not maybe- next year WILL be better! Scott, Ethan and I hope that you all had a wonderful time with family/friends this Christmas! We spent Christmas Eve at Chris & Theresa's. We exchanged a few gifts with the girls which was fun. Ethan did not want anything to do with presents this year. Again, next year WILL be better!

Ethan is still doing well with the thickened liquids. His cough is coming back which makes me a tad nervous because his last chest x-ray did not show any better from when he was in the hospital two weeks ago and he is now off of the pneumonia medicine. Fingers are crossed...

Anywho, we hope that you have a Happy New Year! Have fun, but be safe! All of our love to you, as always.

Disney on Ice & Most importantly- We have ANSWERS!

Hello everyone!

Let's recap, shall we? So, you all know that Ethan is in remission for leukemia. He has about 9 more months to go until he is done with treatment. He has been very sick over the past year especially. He keeps spiking fevers with no apparent source. WE HAVE A SOURCE!!!

On Saturday, I drug Scott and Ethan with me to my office so I could decorate my cubie- there's a $25 Target gift card is at stake people! I'm on it! ;-) Here's what it looks like so far (I really should be compensated for that lovely Costco Kirkland advertisement!)...




So, now that you've enjoyed my office space, back to the subject at hand...Ethan was fine and playful- even pulling off the bows from the cabinets. Then, boom! Right after lunch he developed chills. When we got home he was 99.7 and just wanting to be held. He was at 104 within 30 minutes. Tylenol took a long time to kick in, but it did after Scott got him to the hospital. I did not make the initial trek because Theresa and I had plans to take Madison to Disney on Ice: Princesses for over two months. If rushing Ethan to the hospital was a new scenario, I would not have gone to the show, but Scott insisted that I go and enjoy our new annual tradition. My grandma used to take me to see the Ice Capades every year and I it was always something that I looked forward to! I am hoping that Madison will too! And, next year Delaney (Madison's lil' sis) gets to get in on the action!

Ok, so Ethan had a chest x-ray done (pretty routine for him now) and it has been showing for a LONG time a spot on his right lung. This time around, it was more profound apparently and he was diagnosed with pneumonia. He has had pneumonia a few times this year. We also had a swallow study done and it turned out to be our miracle. Ethan has been aspirating thin liquids. Ok, for those of you that don't spend half of your lives in the hospital and know what that means- it basically means that a lot of fluid has been going down the "wrong pipe" into his airway. If he can't get it back out of the airway then it settles and gets irratated/infected which equals...dun, dun, dun, dunnnnnnnn: FEVERS! Oh, and we also discovered that he has reflux too! Fun times...

What do we do for this? We now have to thicken all of Ethan's drinks to a honey consistency (with Thick-It, a tasteless modified corn starch that is going to burn an even larger hole in my wallet...not cheap!). He is also going to be taking Zantac for the reflux. No wonder the poor child doesn't look forward to eating! This is good news even though it is bad news. This is an answer to prayer. While the news is not something to be excited about because of the new processes involved, we are hopeful that we will be able to keep booger butt aspiration-free (made that word up, work with me here) and fever-free.

Ethan was released from the hospital last night since the pulminologist (sp?) was confident that Ethan could do well on Clindamyacin (icky med) at home. Amen. So, I stayed home with him today to allow him to rest and just play at home and then his buns are back at school tomorrow! :-)

Lots of love to everyone! We miss all of our family and friends from home, especially this time of year. Hugs.

Home & Well!

Hi y'all!

Ethan was released on Tuesday afternoon. He went to school yesterday and has been great since being home! He is on amoxicillan, so he should be covered against any infections for nine days at least!

I hope that the holiday season is treating you well so far!
Hugs,
Kristen

Quick update

Just a quick update:

Ethan's fever spiked up high again last night right before leaving for the hospital, so it is definitely a good thing that he is there. He needed to be tested for RSV, flu, infections...So far, the RSV and flu are negative and nothing has grown from the culture sample. I don't know what his blood counts look like, but Scott said that he did finally get some rest (I left around 1:30-2am)and that he was playful this morning. Maybe more info later...

Going back after a month out

I was hoping to post before Thanksgiving and then again after, but I didn't. My apologies...Anywho, I hope that everyone enjoyed their holiday! We spent the holiday at our dear friends house. Thank you Chris, Theresa (aka: T*Potts), Madison & Delaney! Ethan enjoyed a real dinner complete with turkey, cranberry sauce, stuffing, sweet potatoes, mashed potatoes and fruit salad! He also enjoyed his own little homemade cup of chocolate pudding courtesy of Theresa's mom, Becky.


Ethan had a temperature spike up to 102.5 later that night, but we decided to watch him at home. Friday no temp. Saturday, Ethan went back to Auntie's T*Potts' house so Scott and I could attend the wedding of my friend and co-worker, Paula. Her new initials are P.M. Her husband's initials are A.M. Of course I have been teasing her that their initials are now A.M & P.M., but it didn't occur to me until AFTER I had their wedding gift wrapped that I should have gotten them a clock!
Oh well...back to Ethan! He started to have another temp at Theresa's, but it subsided and he was fine by Sunday. Monday, about 4:30 a.m. he wakes up and is 103.5. We gave him Tylenol and took him into clinic first thing later that morning. By the time we got to clinic, the fever was gone (good). LOTS of tests are ran again, including a chest x-ray and CT scan. Neither tell us anything we didn't know already, so we opt to get some IV antibiotics to boost him up and then go home around 3pm.

Ethan was fine all week- great week at school! Ate well, drank well, played well, had great therapy sessions...Friday- fever again. We had a big Saturday planned, including breakfast with Santa and then an Oncology luncheon at noon. We did not make either- I was bummed for him!

Today, he was playful. I was sick this morning with some sinus junk that kept me bedridden until 3pm! Gotta love sinus stuff! Anywho, Ethan started looking puny but he needed a nap and he would not lay down- he only cried. I took him to the recliner and rocked him to sleep. His sleeping was deep but restless, so I knew something was brewing. Sure enough, he woke up with a 104. So, we are taking him into the hospital in a little bit. I have to put some finishing touches on a paper that is due tonight and then we will take him in to get some fluids and antibiotics. That's the story for now. His temp is down to 100, so Tylenol is doing it's job. I will try and keep the blog updated, so check back in.

Hugs,
Kristen, Scott & Ethan

Ethan's Cousin, Eryleigh

Ok, so Ethan was telling me that I should brag a little on his new cousin. Miss Eryleigh Meridian Sheetz was born on September 17th. She has two big brothers, Sebastian, 12 and Jaidyn, 10. Miss Eryleigh certainly kept everyone on their toes during Ethan's Auntie Kimmy's pregnacy, that's for sure!!! Well, she was over NINE POUNDS when she was born and is just so cute! Eryleigh was sent an ultra-cute Adidas sweat outfit from her Uncle Scotty and she just looks so "born-to-play-soccer"! :-)

It is hard to be so far away from the newest member of our family, but Auntie Kimmy keeps us up to date with lots of pictures- courtesy of Shutterfly!!!

Test Results

It seems that we may have an answer to all of the fevers! It appears that Ethan has a significant B-cell deficiency. What does that mean? In non-confusing terms, it means that he can't fight off illness that attacks his B-cells because he doesn't have enough of them to fight off anything. How do we fix it? Well, more blood was drawn today, but he will probably have to have routine IVIG transfusions (I like to call it immunity in a bottle). The enzyme that they were making sure was present in order to metabolize his 6-MP (chemo pill) is present, so that wasn't the problem and no other obvious problems have come back from the bone marrow (great news).

So, Ethan is back at school and doing great! He had a great speech therapy session yesterday! He was bribed with his "foot". His Aunt Kamrin finds the foot deeply disturbing...

I am still not feeling well, so I am going to stay home and try to get better. Stuffy noses and heads are never any fun!

Ethan was so tired the other night that he started to fall asleep on the floor with his snake!

Here's to another two weeks of feeling well!

Bone Marrow Biopsy & Tests

Hi! I just received the BEST news! Ethan is still leukemia-free! There were a LOT of tests ran yesterday, but most of them could take weeks for us to know the results. Of course the biggest fear is always that the leukemia trying to resurface, but in Ethan's case- it is not! The doctors really didn't feel that he was relapsing, but it had to be ruled out (Happy Faces). Thank you SO much for your prayers! They worked!

I am actually home with the booger today because he spiked a fever for some reason (dr. says it could have been a reaction to the anesthesia), but since it was over 101 degrees, I had to keep Ethan out of school. I knew that he probably wasn't contagious, but rules are rules...

Have a GREAT weekend everyone, ours just got better!
Hugs, Kristen, Scott, & Ethan

Peter Pan and A Foot

So, Ethan is Peter Pan for Halloween this year. He had been Mickey Mouse for the past two years, possibly even three! Wait until you all see the pictures that I had done at Sears yesterday...oh...my...gosh! So cute! He did so well!

While we were at the mall, Scott found Ethan a fake foot at the Halloween store. We don't know what it is about feet, but Ethan is fascinated with them. So, if you ever have to babysit Ethan and he gets fussy- just whip out a bare foot and you should be good to go! Kind of creepy, yes, but it works! :-)

Nothing else new over the weekend. I'm still trying to catch up with school work. I have two more weeks of these classes and then I'm taking a two week break. Ethan's bone marrow biopsy is on Thursday. I am nervous about it, but I feel good about it too. He has been in great spirits since we brought him home from the hospital (hope that doesn't curse him!). Hopefully, his counts will be good enough to go back to school tomorrow!

Will write after the biopsy results come back...

Home again, home again jiggity jig...

Hi there! Just got home a little while ago. Ethan's cultures were negative (YEAH!), but he is still neutrapenic (LOW infection fighting cells), so he will have to stay home until we find out that he is not anymore. He is in great spirits, just a little tired.

So here's the fun news: We are going to have another bone marrow biopsy done next Thursday. Sounds scary, I know, but it's not for fear of relapse. It is to see if Ethan has something else going on immunology-wise in his bone marrow. It is possible that he has had infections in his bone marrow this whole time, which would explain the fevers and the constant attration to viruses. I don't have a completely clear understanding on all of it yet, but I will be sure to keep you updated. Please pray that everything comes back with the answers we need to keep Ethan healthy! While we love our hospital staff, we just don't like seeing them weekly. I would rather we run into them at Target or something!

That's about it, I think that I'm going to try and get his pictures done later (depending on nap!). He is going to be Peter Pan for Halloween, so I guess I should make sure that his costume fits! I will send pics!

Hugs, Kristen

Back to our "other" home

Just a quick fyi,

Ethan spiked another fever today. His school called me close to 5 to let me know that Ethan had been sleeping a lot this afternoon. He hadn't had a fever, but they felt that I should know since it was out of the ordinary. Well, when I got there to pick him up, he was still asleep and I could tell that he was not well. I picked him up and immediately knew that he had a fever. Sure enough, it was 101.8. Betweeen the time it took to get from school to home (only about 5-10 minutes), his temperature went up to 102.4. I put him in a bath and it was horrible for him. He felt awful and had the chills too. I called the hospital and they said to bring him in. I gave him Tylenol to try and make him feel a little better, but it didn't do anything. His fever was up to 103 by the time we were checked into our luxury suite. Scott is staying with him tomorrow at least and I am going to try and get some rest now. Ethan was sleeping when I left, they are going to start antibiotics and he was already on fluids when I left. Please pray that this is a relatively short visit and that the doctors can figure out why Ethan keeps getting these darn fevers!!!

On a lighter note...here's a couple of pictures. One of them he is Mr. Serious, another he is posing and the other he is being my Lil' Indian! He's more in touch with his Indian side than I am!!! lol!

Mr. Bubbles

This was taken a LONG time ago, but it remains a favorite. He just has a sparkle in his eyes...

Ethan is home!

Well, we are just assuming that Ethan wanted Grandma to get the full North Carolina experience (according to Ethan) and make a trip to the hospital. Ethan came home on Friday night. He has been happy ever since. Who knows what was up...

Scott's mom left this afternoon. We took her out to Victory Junction beforehand and we were given a small tour of the camp. It was a beautiful day today, I wish that she could've enjoyed more of today's weather during her visit! Ethan sure will miss her come tomorrow morning! He was really getting used to having Grandma around!

Anywho, I am still computer-less. My neighbor was kind enough to let me borrow her laptop so I could work on my homework. It is really hard for me though because I am not used to it AT ALL! I am hoping to go and get a new computer tomorrow...

I think that's it...

Hugs!

A little Spinal = Fever & Hospitalization

Well, I guess this is one of the reasons why I created this blog thing-a-ma-jigger...

Ethan had his routine spinal tap (LP) yesterday morning. This is so the doctors can take spinal fluid out to make sure that the leukemia is not trying to hide in the spinal column and then they inject chemotherapy into the spinal fluid. He also gets a shot of Vincristin (another chemo- the one that actually made him lose his hair in the beginning). When Ethan gets a LP and Vincristin, a low-grade temperature and headache/irritability are common side effects, but Ethan ended up spiking to almost 102 last night.

Ethan did not come out of his anesthesia like usual, but I was thinking that he may have just been given a little extra Propofol (sedation med). He was extremely crabby, wouldn't eat, would barely drink...The big tip off was his eyes. I kept telling my mother-in-law (visiting from California) that his eyes did not look well, but as the day went on, he was more playful and perking up so I just watched him. The eyes got sicker and sicker post 4 pm and then the fever set in about 7pm.

I called the hospital and they said that we had to bring him in. There is a chance that his port-a-cath is infected. This is not a good thing. We have had that problem once before and Ethan had to have it switched out to the other side of his chest because yeast grew on it and yeast does not go away once it attaches to the port.

As I said above, Scott's mom is in town visiting and she is set to go home tomorrow night. I feel so bad for her! I didn't want her to see Ethan like this and I especially don't want her to get back on a cross-country flight knowing that her "guy" is in the hospital. There's nothing that I can do about it, but I wish I could!

I think that's about it. Scott is with Ethan today while I am at work. I left the hospital around 1:30 am and got to sleep around 3am, was up at 5:30...so, work is on notice to BEAR WITH ME! :-) I will try to not bite anyone's head off!

I just keep getting more and more frustrated with school. My home computer's "motherboard" decided to go home to its "Mother Ship", so I have been without a computer at home to do my homework. I had gone over to Theresa's for a couple of nights and stayed until 11pm both times trying to work on homework. What a nice host I am to the MIL...Hi! I have to leave you now to go and do homework! Geesh... And with all of Ethan's hospitalizations lately, it is just getting harder and harder to concentrate on it all.

Ok, the rambling has officially started (2 hours sleep remember).

Love to all.