Ethan update

[Guest guest]

What a fantastic picture! We hope you & Ethan enjoy your trip!

Sandy & Ross <kris10z@...> wrote:

Hi everyone!

I was wondering why I wasn't hearing any messages, then low and behold, I was kicked out of the group by my mail server for some odd reason, anywho...

Ethan has been doing really well, sort of. His attitude has been very good and he didn't get the mouthsores nearly as bad this last round (barely at all really), but he did happen to get another blood infection. We were able to come home today from the hospital after a week and home health came out to show us how to administer his meds through his port.

Are any of you going to the NDSS conference in DC? We didn't think we were going to be able to go, but I have arranged to go the Saturday and Sunday of the conference. I hope to meet some of you there! I will be bringing Ethan too...

That's the short version of everything over the past couple of weeks. We did get to go to my sister's graduation in California which was a nice get away.

I hope that everyone has a wonderful and safe Fourth of July! God bless!

Faulkner

Mom to Ethan, 3 (DS & ALL 02/13/04)

Hugs & Smiles,

*The pictures are from two treatments ago, he insisted on dipping his face into the pudding rather than using a spoon...goofy boy!*

Hugs & Smiles,> ATTACHMENT part 2 image/jpeg name=P6051100.jpg

[Guest guest]

No, we won't be there. Have fun and good luck. Glad is improving; hang in there!

Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-cwww.caringbridge.org/in/kylefacts

[ ] Ethan update

Hi everyone!

I was wondering why I wasn't hearing any messages, then low and behold, I was kicked out of the group by my mail server for some odd reason, anywho...

Ethan has been doing really well, sort of. His attitude has been very good and he didn't get the mouthsores nearly as bad this last round (barely at all really), but he did happen to get another blood infection. We were able to come home today from the hospital after a week and home health came out to show us how to administer his meds through his port.

Are any of you going to the NDSS conference in DC? We didn't think we were going to be able to go, but I have arranged to go the Saturday and Sunday of the conference. I hope to meet some of you there! I will be bringing Ethan too...

That's the short version of everything over the past couple of weeks. We did get to go to my sister's graduation in California which was a nice get away.

I hope that everyone has a wonderful and safe Fourth of July! God bless!

Faulkner

Mom to Ethan, 3 (DS & ALL 02/13/04)

Hugs & Smiles,

*The pictures are from two treatments ago, he insisted on dipping his face into the pudding rather than using a spoon...goofy boy!*

Hugs & Smiles,

[Guest guest]

Hey there...Sorry that I haven't been able to write back any sooner. I went to the NDSSconference in DC over the weekend and then I don't get home until late andam really too tired to write. So I will take a moment away from work...Great news on Ethan...his cultures have been negative and no fever sincetaking the port out. His counts are doing so good that we are knocking themback down today with his final chemo treatment (inpatient anyway). They maybe able to get him back into surgery on Friday to have the port put back in.I can't wait to be honest. This central line makes me very nervous. Hetends to pull on it and it is only held on by a couple of stitches. Hisyeast medicine is being switched to oral today and he finished up hisvancomyacin today too. He needs to start eating though. His appetite hasbeen pretty close to nil since being admitted. I really thought that itwould start to pick up when he started feeling better, but it just hasn'tyet. He is smiling again though which is so important. It is so hard toknow he is sick but for him to also act sick makes it worse. Does that makesense?!?!So, if everything goes according to plan, we should be home by this weekend.I have requested a sleep study for Ethan though because I think he has sleepapnea (extremely common with DS). That should be fun (sarcasm)...My weekend was very rushed. I left for DC from here at 2 to fly toCharlotte at 4. The flight to DC from Charlotte was delayed over two hoursbecause of thunderstorms over Dulles. We sat on the flippin' runway for anhour and a half! Well, when I finally got to DC, I had to deal with shuttleservice which then took forever. By the time I got into my hotel room itwas 11:30! I ended up spending almost $18 for a room service cheeseburger,fries & lemonade, but I was so hungry!The conference was such an amazing experience, even though it was only for aday for me. I learned so much, met some wonderful children & adults withDown syndrome as well as some terrific parents. I am so glad that I went!I am even going to do my best to go to next years in Chicago! I was able tomeet Burke (Corky, Life Goes On) and get his autograph for Ethan. Ethan is getting his little collection of autographs. has been goingto some concerts in the hard rock Christian circuit and has been gettingautographs from the bands for Ethan, plus he also has a couple of Panthercheerleaders autographs and a picture with them too!I had the second phase of my root canal this morning. Not fun but nothorrible either. Now I just have to get a crown over it I guess. The goodnews is that my dental insurance finally kicked in, so hopefully thefinancial blow won't be too terrible.I can't believe summer is going to start winding down soon! It hasn't beentoo miserably humid hot yet. I actually look forward to the afternoon rain.Shep hates it though. Poor puppy doesn't come in from the rain so he justruns around out there and gets soaked. And, he absolutely hates the thunder & lightning! There was a storm last night and he was going crazy! Plus heis depressed because hasn't been home since he is staying with Ethanin the hospital while I go to work this week.

That's the latest for now...

Hugs & Smiles,

[Guest guest]

I know the eating thing, too. has often stopped eating entirely. He has a PEG tube, or Gtube, and gets nightly and nap time feedings of Pediasure. It's rescued him from malnutrition and literally saved his life. He just started maintenance today, and in the last week has started to eat a little, though oral motor issues have always been a major problem for him. I wish he didn't need the Gtube, but I sure am grateful for it! He is 4.5 years old and 28 pounds.

Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-cwww.caringbridge.org/in/kylefacts

Re: [ ] Re: Ethan update

Hi ,

That is good news about Ethan. It totally makes sense I use to feel the same way. As for eating Missy stayed teh same weight of 32 pounds for the 2.5 years that she was on chemo. So she was in 2nd grade and only weighed 32 pounds. So I know what youa re saying about the eating.

[Guest guest]

Kris --

Sorry to hear about all of the problems Ethan has been having!! I

hope things are going better for you all, now. What is Ethan's

current status?

mother of Anya (ds) 3 1/2 and Sam 2

> Hey there...

>

> Sorry that I haven't been able to write back any sooner. I went to

the NDSS

> conference in DC over the weekend and then I don't get home until

late and

> am really too tired to write. So I will take a moment away from

work...

>

> Great news on Ethan...his cultures have been negative and no fever

since

> taking the port out. His counts are doing so good that we are

knocking them

> back down today with his final chemo treatment (inpatient anyway).

They may

> be able to get him back into surgery on Friday to have the port put

back in.

> I can't wait to be honest. This central line makes me very

nervous. He

> tends to pull on it and it is only held on by a couple of

stitches. His

> yeast medicine is being switched to oral today and he finished up

his

> vancomyacin today too. He needs to start eating though. His

appetite has

> been pretty close to nil since being admitted. I really thought

that it

> would start to pick up when he started feeling better, but it just

hasn't

> yet. He is smiling again though which is so important. It is so

hard to

> know he is sick but for him to also act sick makes it worse. Does

that make

> sense?!?!

>

> So, if everything goes according to plan, we should be home by this

weekend.

> I have requested a sleep study for Ethan though because I think he

has sleep

> apnea (extremely common with DS). That should be fun (sarcasm)...

>

> My weekend was very rushed. I left for DC from here at 2 to fly to

> Charlotte at 4. The flight to DC from Charlotte was delayed over

two hours

> because of thunderstorms over Dulles. We sat on the flippin'

runway for an

> hour and a half! Well, when I finally got to DC, I had to deal

with shuttle

> service which then took forever. By the time I got into my hotel

room it

> was 11:30! I ended up spending almost $18 for a room service

cheeseburger,

> fries & lemonade, but I was so hungry!

>

> The conference was such an amazing experience, even though it was

only for a

> day for me. I learned so much, met some wonderful children &

adults with

> Down syndrome as well as some terrific parents. I am so glad that

I went!

> I am even going to do my best to go to next years in Chicago! I

was able to

> meet Burke (Corky, Life Goes On) and get his autograph for

Ethan.

>

> Ethan is getting his little collection of autographs. has

been going

> to some concerts in the hard rock Christian circuit and has been

getting

> autographs from the bands for Ethan, plus he also has a couple of

Panther

> cheerleaders autographs and a picture with them too!

>

> I had the second phase of my root canal this morning. Not fun but

not

> horrible either. Now I just have to get a crown over it I guess.

The good

> news is that my dental insurance finally kicked in, so hopefully the

> financial blow won't be too terrible.

>

> I can't believe summer is going to start winding down soon! It

hasn't been

> too miserably humid hot yet. I actually look forward to the

afternoon rain.

> Shep hates it though. Poor puppy doesn't come in from the rain so

he just

> runs around out there and gets soaked. And, he absolutely hates

the thunder

> & lightning! There was a storm last night and he was going crazy!

Plus he

> is depressed because hasn't been home since he is staying

with Ethan

> in the hospital while I go to work this week.

> That's the latest for now...

>

>

>

> Hugs & Smiles,

>

[Guest guest]

Thanks for the update, and I'm sorry you're going through all this. I'm on another loop for ALL parents, and many of us have had kids battling viruses with effects on counts, fevers, appetites, and many other things that have had us worrying. But so far, it's all been viruses, not relapse. I hope and pray the same is true for Ethan. We'll be anxious to hear how it goes this week, so please try to update if you can. Know you have our support and cyber hugs!

Bethmom to , age 4, diagnosed with high-risk preB ALL 10-29-03, on CCG1961-c, in LTM as of 8-3-04www.caringbridge.org/in/kylefacts

[ ] Ethan update

Hello family & friends!Ok, so I'll try and sum up the past few days for you...Thursday (2 am): Ethan wakes up very fussy, whiny, and HOT. He has a fever of 102. Extremely hot for him, I call the hospital. I give him some tylenol and his fever goes down finally around 6am. and I take Ethan to clinic at the hospital for labs. Blood counts come back very low. Ethan is admitted into the hospital. Ethan's fever keeps spiking, topped out at almost 104. He has a chest x-ray which confirms that he has pneumonia in his right lung. Three different antibiotics are started. The doctor gave us a few scenarios of why he is so sick all of a sudden. The third option we don't like...relapse.Friday: Ethan slept pretty good. He had a fever spike around 2:30 am. His labs later that morning show that his blood counts have plummeted even more. Good news for that day was that his fever was staying between 99 & 100. Ethan received a platelets transfusion as well as a red blood transfusion. If he can hold his own over the weekend, that's a good sign. Otherwise, we are going to have to do a bone marrow extraction the beginning of the week.Saturday: Seemingly good day, except early that morning his line broke somehow and I woke up to a bloody bed and Ethan's shirt covered in blood. We had to re-access his port in the middle of the night (that always sucks!). His fever was non-existant all day until late afternoon. I don't know why it decided to go up again, but it only did it that once. His counts seemed like they were starting to come up on their own (with a little transfusion help!)...Sunday: Counts are dropping again. His platelets are the only thing that has semi-stabilized/increased (from 54 to 60; normal is between 160-360). Doctor tries to reassure us that Ethan may just have a viral infection that has to run its course, but is also honest and says that it is unusual for his counts to be low across the board with just a viral infection. We will probably have to do a bone marrow check tomorrow or Tuesday. He hasn't had any fever today and it getting his feisty attitude back, he's just itching to get into trouble! hehe...Of course, he has been in bed for four days, so I'd probably have an attitude too!We will also have another chest x-ray done to see how his lung is clearing up. His cough sounds icky, BUT his lungs sound clearer. That's good.So, I was nervous for the winter months with good reason apparently. Of course, I never thought the word relapse would come into a conversation so soon, especially while in the maintenance phase of treatment. I will try my best to keep you posted. It is extremely difficult for me to get to a computer. All of my addresses are at home, so please don't be upset when you don't hear from Master Ethan for Christmas. Maybe after...We anxiously await leaving the hospital so we can meet Ethan's Aunt Kamrin at the airport on Saturday! Thank you for all of your prayers. For once, we pray for a viral infection vs. relapse. Much love to you all, Happy Holidays!(This is back-up e-mail, my Road runner has issues if I'm not using it at home : kris10z@...)

[Guest guest]

Hello again!

I just wanted to write you a quick note before lying down for a nice nap!

Ethan was released from the hospital today! YEAH! He was so ready to go!

His counts came up enough to leave and we have to go back to clinic on

Friday, but we're perfectly fine with that!

Thanks again for all of your kind thoughts, wishes and prayers! Talk with

you again soon...on a better note I hope!

Much love,

Ethan update

> Hello family & friends!

>

> Ok, so I'll try and sum up the past few days for you...

>

> Thursday (2 am): Ethan wakes up very fussy, whiny, and HOT. He has a

fever of 102. Extremely hot for him, I call the hospital. I give him some

tylenol and his fever goes down finally around 6am. and I take Ethan

to clinic at the hospital for labs. Blood counts come back very low. Ethan

is admitted into the hospital. Ethan's fever keeps spiking, topped out at

almost 104. He has a chest x-ray which confirms that he has pneumonia in

his right lung. Three different antibiotics are started. The doctor gave

us a few scenarios of why he is so sick all of a sudden. The third option

we don't like...relapse.

>

> Friday: Ethan slept pretty good. He had a fever spike around 2:30 am.

His labs later that morning show that his blood counts have plummeted even

more. Good news for that day was that his fever was staying between 99 &

100. Ethan received a platelets transfusion as well as a red blood

transfusion. If he can hold his own over the weekend, that's a good sign.

Otherwise, we are going to have to do a bone marrow extraction the beginning

of the week.

>

> Saturday: Seemingly good day, except early that morning his line broke

somehow and I woke up to a bloody bed and Ethan's shirt covered in blood.

We had to re-access his port in the middle of the night (that always

sucks!). His fever was non-existant all day until late afternoon. I don't

know why it decided to go up again, but it only did it that once. His

counts seemed like they were starting to come up on their own (with a little

transfusion help!)...

>

> Sunday: Counts are dropping again. His platelets are the only thing that

has semi-stabilized/increased (from 54 to 60; normal is between 160-360).

Doctor tries to reassure us that Ethan may just have a viral infection that

has to run its course, but is also honest and says that it is unusual for

his counts to be low across the board with just a viral infection. We will

probably have to do a bone marrow check tomorrow or Tuesday. He hasn't had

any fever today and it getting his feisty attitude back, he's just itching

to get into trouble! hehe...Of course, he has been in bed for four days, so

I'd probably have an attitude too!

>

> We will also have another chest x-ray done to see how his lung is clearing

up. His cough sounds icky, BUT his lungs sound clearer. That's good.

>

> So, I was nervous for the winter months with good reason apparently. Of

course, I never thought the word relapse would come into a conversation so

soon, especially while in the maintenance phase of treatment. I will try my

best to keep you posted. It is extremely difficult for me to get to a

computer. All of my addresses are at home, so please don't be upset when

you don't hear from Master Ethan for Christmas. Maybe after...

>

> We anxiously await leaving the hospital so we can meet Ethan's Aunt Kamrin

at the airport on Saturday! Thank you for all of your prayers. For once,

we pray for a viral infection vs. relapse.

>

> Much love to you all, Happy Holidays!

>

> (This is back-up e-mail, my Road runner has issues if I'm not using it at

home : kris10z@...)

>

[Guest guest]

Hooray! Thanks for sharing. Hope all goes well at home.

Beth

Ethan update> Hello family & friends!>> Ok, so I'll try and sum up the past few days for you...>> Thursday (2 am): Ethan wakes up very fussy, whiny, and HOT. He has afever of 102. Extremely hot for him, I call the hospital. I give him sometylenol and his fever goes down finally around 6am. and I take Ethanto clinic at the hospital for labs. Blood counts come back very low. Ethanis admitted into the hospital. Ethan's fever keeps spiking, topped out atalmost 104. He has a chest x-ray which confirms that he has pneumonia inhis right lung. Three different antibiotics are started. The doctor gaveus a few scenarios of why he is so sick all of a sudden. The third optionwe don't like...relapse.>> Friday: Ethan slept pretty good. He had a fever spike around 2:30 am.His labs later that morning show that his blood counts have plummeted evenmore. Good news for that day was that his fever was staying between 99 & 100. Ethan received a platelets transfusion as well as a red bloodtransfusion. If he can hold his own over the weekend, that's a good sign.Otherwise, we are going to have to do a bone marrow extraction the beginningof the week.>> Saturday: Seemingly good day, except early that morning his line brokesomehow and I woke up to a bloody bed and Ethan's shirt covered in blood.We had to re-access his port in the middle of the night (that alwayssucks!). His fever was non-existant all day until late afternoon. I don'tknow why it decided to go up again, but it only did it that once. Hiscounts seemed like they were starting to come up on their own (with a littletransfusion help!)...>> Sunday: Counts are dropping again. His platelets are the only thing thathas semi-stabilized/increased (from 54 to 60; normal is between 160-360).Doctor tries to reassure us that Ethan may just have a viral infection thathas to run its course, but is also honest and says that it is unusual forhis counts to be low across the board with just a viral infection. We willprobably have to do a bone marrow check tomorrow or Tuesday. He hasn't hadany fever today and it getting his feisty attitude back, he's just itchingto get into trouble! hehe...Of course, he has been in bed for four days, soI'd probably have an attitude too!>> We will also have another chest x-ray done to see how his lung is clearingup. His cough sounds icky, BUT his lungs sound clearer. That's good.>> So, I was nervous for the winter months with good reason apparently. Ofcourse, I never thought the word relapse would come into a conversation sosoon, especially while in the maintenance phase of treatment. I will try mybest to keep you posted. It is extremely difficult for me to get to acomputer. All of my addresses are at home, so please don't be upset whenyou don't hear from Master Ethan for Christmas. Maybe after...>> We anxiously await leaving the hospital so we can meet Ethan's Aunt Kamrinat the airport on Saturday! Thank you for all of your prayers. For once,we pray for a viral infection vs. relapse.>> Much love to you all, Happy Holidays!> > (This is back-up e-mail, my Road runner has issues if I'm not using it athome : kris10z@...)>

[Guest guest]

Hello friends!

One of these days I will be coming to you with GOOD news...that day is not today. At least the story is the same: Had to take Ethan in to the hospital this morning- he was admitted. He's neutrapenic and having some tummy issues. At least his fever broke and hasn't been back since this morning. is staying with him.

I feel guilty for leaving tomorrow night to go have fun (I am going to the Bon Jovi concert in Charlotte...I've been waiting to go since I was 13!). Everyone tells me to go and have a good time, but I still feel guilty...Tell you all about the "woo hoo-ing" later! :-)

Say a prayer for the Boog's...

Hugs & Smiles,

www.faulknerfam.com