Fen
Ethan David Smith was diagnosed with Acute Lymphocytic Leukemia, a cancer of the blood and bone marrow, on June 22nd, 2006 at the age of 23-months. Throughout the past couple of years, Ethan and his family have been going to weekly, biweekly and monthly chemotheraphy appointments, radiation appointments and several inpatient visits.
UPDATE 7.21.09
So I am a little late on this update, but better late than never! Ethan has been doing great. We left the hospital in January and Ethan was immediately put on isolation until his immunization test came back good. Well, the 2nd week of July we were off isolation!
They still cannot tell us if the transplant worked, we can only pray that it did. It could take up to 2 years to consider him "cancer free" or "Leukemia free". With all of the treatment, they do worn of other cancers he could get, especially from the total body irradiation. We will just continue to pray that he heals from this and never gets cancer again.
We are planning on Ethan starting Kindergarden this year! He has not been able to go to school or anything because of his diagnosis, but plan on enrolling him at Dodgeville Elementary this year. He is really excited!
Our next appointment isn't until September, unless, of course, something happens before then. We pray it won't.
AND, Ethan welcomed his brand new brother on May 12th! It was exciting, he had to wear his mask to come see us, but he got to come up!
That is all for now, I will try to add more at another time.
God Bless,
Travis, Jenny, Lilly, Ethan and Gabe
UPDATE 3.24.09
Ethan's last appointment went very well. All signs show that his is engrafting Lilly's cells from the bone marrow transplant. The doctors will know more by the of this week. We would like to thank everyone for all the prayers while we are managing the different trails through this process, all views seem to be going down the right trail for Ethan!
UPDATE 1.26.09
Ethan’s kidney test didn’t come back any better – it is getting worse. Not terrible, but enough to cause concern.
Travis is up at the hospital with Ethan right now, they are going to give him 500 mL of fluid and then sending them home. They were going to admit him, but they don’t have the beds available, so they couldn’t. He still needs to be in the Bone Marrow Transplant Unit (isolation – which only has 4 beds-why when building this hospital they didn’t add more is BEYOND ME!!! But, we get to come home!). We will be going back tomorrow to check everything again and see if they want us admitted or not. His kidney tests need to come back either holding steady or at least a little increase for us to be able to come home.
Also, his platelets and hemoglobin keep dropping, his platelets are now down to 107 and his hemoglobin is down to 8.4. They think it could be from his tacrolimus and sirolimus, but the test hadn’t come back yet. AND, Travis’s cell lost power so he can’t call me back…..argh.
They plan on taking him off of his TPN and see if they can’t get him to start eating more. Hopefully that will help get his kidneys working better – they will keep him on fluids only, but no more nutrition or lipids (the fats). We will give it to him tonight and then go from there.
Lilly and I are at home because of her fever this morning. I have to check it again here to see if it has gone away or not. She is pretty lazy and looks pretty crummy, but laying in bed all day has it’s advantages!
That is all I know for now, I will keep you updated as we find out more. And, Travis can respond to everyone on anything I was incorrect about!
UPDATE 12.23.08
Ethan's white counts doubled again - from .4 on Sunday to .8 Monday and 1.2 today! His neutrophls went from 64 to 170, but his platelets are still dropping. Once his neuts hit 500 for 2 days in a row and he doesn't need a platelet transfusion for 2 days we get to go home! (Well, as long as we don't get a fever or anything else)
Dr. DeSantes (Ethan's Doctor) said we can look at going home probably sometime next week or the week after, depending on how he is doing. We are hoping for next week, preferably by the 31, but only time will tell. (Actually, it would have been nice to go home a couple of weeks ago - but what do you do?!) Hopefully tomorrow his neutrophils wll be 500 or more and his platelets start rising!
He is still working very hard to breathe - mainly they think from his mouth sores he probably has in his throat. They did an epinephrine moisture treatment, where he breathes in it through a tube for about 5 minutes today. He did cough up some when she did it and coughed up more later today, but it was a big improvement to start with.
They are going to do chest xrays tomorrow and Friday and another viral culture to be sure that he didn't get any viral infections while we have been in here (he better not have, or I will TRACK THAT PERSON DOWN!)
He also started drinking some ice water and took a couple licks off a popsicle, so he is starting to understand it doesn't hurt as bad as he thinks it is going to.
We did have to go back to pull-ups. He has been really loose, so he sometimes leaks, but he still goes potty when he needs to. It has gotten a little better, but we have a ways to go.
Other than that, they decreased his morphine again today, from .4 to .3 and plan to drop his TPN (nutrition in a bag). They still have him on 3 antibiotics, but should be off those soon.
Lil is doing well. She asked me when the holes in her back would be gone because people keep asking her why she has them in her back. I told her to tell them, but she rolled her eyes at me. She is still a snot even when I only see her once every few days! (Like mother like daughter, I guess).
Tomorrow Travis and Lilly are planning on coming up to stay for Christmas Eve and Christmas Day. Hopefully the weather holds out so they can come up.
Poppy Dave is planning on staying up here with Ethan on Friday night so Travis, Lilly and I can get out of here for a night. Hopefully he is up to tip top shape by then! (And hopefully Poppy has some good nurses!!! :-)).
If I don't see you or send an update before then - Everyone have a very MERRY CHRISTMAS!!!!
UPDATE 12.19.08
The snow is beautiful when you are stuck in here and can just watch it all fall on the cars below!!!
Anyway, we had a rough night last night, so we started a morphine drip until his mouth sores go away. Yes there are mouth sores in his throat - well, that is the general idea, no one is able to see them and he doesn't have any in his mouth, but that is what we are pretty certain it is.
He has had a dry cough. The SENIOR resident, oh and she stressed SENIOR, said it could be croup (is that how it is spelled? - anyway, you get the idea). Little does SHE know. Ethan and Lilly have both had croup and I don't believe that is what this is - it isn't in his lungs, it is in his throat - man I should be a doctor.... HA.
UPDATE 12.16.08
We are on DAY 6 (we started at day -10)
Today started really good - Ethan was up and active all morning and most of the afternoon, when I was here.
I stayed home with Lilly last night and took her to Girl Scouts (they handed out the COOKIE sale stuff, so if anyone wants some....:0)). Anyway, she was too sore to go to school today, so she spent the day at Janice's. Janice thinks it may be because of the cold and my mom thinks it may be because she overdid it yesterday, but we aren't exactly sure.
Tonight she sounded good - she was making different animal noises in the shower....weirdo....
The nutritionist stopped this morning and wanted to discuss putting Ethan on a feeding tube, I politely denied and he is on IV nutrition. They put te fats in one bag and the nutrients in another bag so it looks like he is getting a lot more stuff than he really is.... He has only lost about a pound so far, which is a lot more than we want him to lose, but not enough for me to take on the risk of the feeding tube just yet. With is immune system so comprimised, now is not the time to discuss feeding tubes.
His platelets had dropped again, but that is to be expected through at least this weekend, probably. He will hit his 10-day mark on Thursday - the day everything should be at their lowest and HOPEFULLY start building back up.
I think, me, and just me, think that Ethan is getting hte mouth sores in his throat. He hasn't been swallowing his medicine as easily as he was and won't even eat ice cream anymore. He doesn't seem to be in pain and he says nothing hurts, but his voice is getting lower and he sounds more hoarse. Not only that, he seems to get tears easier, but that could be because we are all tired....
His rearend is getting sore, another thing expected from the treatment, but we are doing everything we can to keep it clean and dry. Hopefully it will not get any worse before it gets better!
Mom stopped last night and dropped off another tote of goodies from the wonderful people she works with at Lands End - You should have seen Ethan's face - I showed him the mini-crackers and he said OOOH-CRACKERS, then the pretzels, fruit snacks, and even the soup mix. He LOVED them! (they already gave us 2 totes of stuff and a cooler). There was also a wrapped present in the tote addressed to Lilly and Ethan, so we put it under the tree we have up here to open when they are both here to see it.
THANK YOU!
And, Mr. and Mrs. John Fox sent us more food to eat today - THANK YOU It has been SOOO good! Annette is a wonderful cook! MMMMM.
I don't think I forgot anything, but if I did, let me know and I will try to add it to my next update.
UPDATE 12.14.08
Today is Day 4 of the transplant process. Ethan's platelets and white cells are continuing to trend downward. He will be getting platelets today. His hemoglobin has been doing great ever since he got Lilly's cells. They went way up the day after the transplant and have held their own since then. We hope that continues!
When Ethan was weighed this morning, they found he had lost about a pound since we were admitted. They are going to start him on TPN (Nutrition) tonight to run over 12-hours and then hopefully he will eat tomorrow afternoon. We will continue that until he will eat on his own again.
They removed the Isolation from him today as well. He still coughs a little in the morning and at night, but he doesn't have a viral infection and he sounds great. That was a relief!
Lilly is doing GREAT! She takes iron pills 3 times a day and reminds us every morning, at noon (EXACTLY) and with supper. The entrance sites on her back look great. She still won't bend down completely, but she gets better every day. She hasn't taken any pain medication since yesterday early afternoon.
The nurse said she expects his mouth sores to begin in 2-3 days, so we will see what happens. Hopefully we will begin engraftment in a few days and improve over the next week or so.
We'll do our best to keep you all updated as it continues.
UPDATE 12.11.08
Sorry I didn't keep everyone updated yesterday, but it was a hectic day.
Everthing went pretty well. Lilly was in a little bit of pain, but they took care of that for her. She was very happy to see everyone here for her when she got out of the recovery room and into her room. It was really nice, they put Lil in the Bone Marrow Transplant Unit 2 doors down from Ethan. So, we all fit in one room! (well, sort of).
It took about 2 -2 1/2 hours (I think) to get the bag of bone marrow into Ethan after they hung it. They gave him benadryl so he pretty much slept through it. All they did was hang the bag of Lilly's bone marrow and let gravity pull it into Ethan's body.
He did get a rash on his back, legs and arms from the transplant, but they think that was because of the large amount of red cells that went into his body along with the bone marrow. They gave him more medicine and Travis gave him a bath and they went away.
Lilly is still sore today, but she is eating, and not throwing up!! Ethan and Travis are still sleeping - lucky guys. Lilly woke me up early this morning - when they came in to take her blood....
She is excited to stay home tonight and sleep in her own bed.
Otherwise, that is really all I have for now - see you all soon.
UPDATE 12.10.08
Lilly is recovering from donating her bone marrow and Ethan received the transplant today. We will know in 3 weeks if Ethan's body accepts or rejects Lilly's marrow. We will keep you up to date.
UPDATE 12.5.08
We are on Day 5 of our transplant process. Total Body Irradiation is DONE! We started Day 1 of Thiotepa (Chemo), which will be 2 days. Today and
tomorrow. Sunday and Monday will be Cytoxan (chemo), Tuesday a day of rest and Wednesday is TRANSPLANT DAY!
Ethan is really tired. He likes to stay in bed. We did give him a bath in his tupperware container today (THANKS MOM) which we decorated with
stickers. He needs to be bathed 3-4 times a day because of the chemo, argh, but he really enjoyed taking his bath.
We were able to go in the little hallway outside our room to ride in the wagon up and down, but that is the extent of leaving our little room.
We got our ceramic Christmas tree today (THANKS SHELLY & GRANDMA!), got the stockings out and put some (very little) lights up to give our room
more of a "holiday" theme since we won't be leaving it anytime soon.
Otherwise, not much going on up here. Lilly has a little cold, but nothing serious. She went to the Dr this afternoon and needed to get back to
school right away becaused Principal Piper was going to get a pie in her face!
John - thanks for the food! The lasagna and turkey were REALLY good!
It won't be confirmed until Tuesday, but it looks like Lilly is scheduled to be in the OR at 10 a.m. on Wednesday for her harvest. I don't know how
long there will be between the harvest and the transplant, but we will keep you updated as we find out.
UPDATE 10.31.08
Ethan came home today and even went Trick-or-Treating. He is doing good and we will continue to update you on him as more updates are needed.
Ethan and Lilly are scheduled to be in the hospital December 10th for Ethan's Bone Marrow transplant. We will update this website with more information once we hae everything in order.
As always, thank you for your continue support for Ethan and his family.
UPDATE 10.28.08
Yes, we are still up here (It has been about 4 weeks). Ethan's white count went up from .3 to .4 from yesterday to today, so they are climbing! Katy, Ethan's FAVORITE nurse (really my favorite nurse, but whatever), and his primary nurse, told us today that she "predicts" they will be at .6 or .7 tomorrow, meaning we will be able to see his neutrophil count!
When his neutrophil count is above 500, we get to go home. No telling when that is going to be until we can see what he is at right now.
His hemoglobin did go down to 8.1. If it drops below 8.0, he will need a transfusion, but they are waiting until either he shows signs of needing blood, or until his labs tomorrow. Hopefully they will grow so we don't need a transfusion, but you never know.
Otherwise, all is well. Ethan is playing in the Playroom, as usual. Today it was computer first and now Candyland with the volunteer. It looks like we get to make Tie Dye Halloween t-shirts at 3:30 today! EXCITING! We'll see if Ethan will stay in there, he doesn't like to keep his mask on, so when other kids want to go in there, he normally wants to go back to the room - we'll see if we can get him to stay today.
UPDATE: 10.14.08
Hello all,
The Dr stopped in to see us after 9 p.m. last night - I was already in our "spare room" getting to sleep for the night, so Travis talked to him. He said it was the same treatment as last week, but we will be in the hospital until his counts recover. Being the guy Travis is, he asked when we should expect that to happen, Dr. Sondel said in 2-3 weeks.
We were under the impression because he was getting put back on GCSF that we would be able to leave sometime this weekend, but because the chemo does not peak until day 10, they expect us to be there through at least next week.
Travis is planning on going to work tonight and then going home to see about some rest. If he is off early enough, he may pick up Lil and take her home with him, but it doesn't look too promising. He won't know until later.
I will be coming home Wednesday night, I don't know what time because Melody and Wyatt are coming up that afternoon after Wyatt's appointment. Hopefully early enough to take Lilly home with me for a night.
Travis will be home Thursday night for the Spaghetti supper, so he should be able to take Lilly home with him that night. Friday through the weekend is still up in the air at this point.
Ethan is doing good. He got his chemo last night at 6 and then this morning at 6 again. We will do it again tonight and tomorrow morning and then get his shot again tomorrow late morning early afternoon. From the orders I read, it looks like the GCSF should start Thursday morning. They are doing blood counts every morning this time, too, so I am very happy about that.
Anyone wanting to come visit - COME ON UP!!!!!! I will probably need a break at some point! I will be leaving work soon, so if you want to email me back - email us at ethansmithbenefits@verizon.net after 12:30, otherwise, you can call me later.
UPDATE: 9.15.08
On September 15, 2008 Ethan was admitted for his 5-day chemo treatment. He started off with a sedation appointment at 11:30 for a lumbar puncture and then at about 5:30 were able to get into our inpatient room. His Dr. came in Monday night and said his neutrophils were at 590 and to start the treatment they wanted them at 750. He said he was comfortable with starting them, but it was ultimately up to us if we wanted to go home and come back in a couple of days or start Monday night. Travis & Jenny made the decision to start it.
Though his neutrophil count was down, his platelets were up to 222!
On Monday night, the chemo was supposed to start at 8 p.m. and run for 2 hours followed by 15-minute blood pressure checks for 1-hour. Unfortunately, things don't always go as they should, and the chemo didn't get up to us until after 9:30 p.m. Thus, Travis & Jenny didn't get much sleep.
Tuesday went pretty smoothly. Ethan played in the play room most of the day. He made a foam dinosaur picture frame, a sand-art pen, and a Frankenstein suncatcher. He also played dinosaur/animal fighting with the childlife specialist and daddy for a while. We also got to see Sadie and Bailey the PetPal dogs that came in today. Baily is a collie so I loved him! He reminds me of Baxter...
It was funny, everytime he said "hi" to someone he would say "Hi, My name is Ethan. This is my daddy, Travis and my mommy, Jenny." It was really cute. Everyone gets a kick out of him up here!
Anyway, the chemo we are on is Etoposide and Cyclophosphamide (or Cytoxan). They both cause or could cause bladder problems, including bleeding of the bladder. Ethan is using the bathroom A LOT! They give him fluids all the time when we are here anyway, but this time it is for the chemo and it really gets everything running through him!
Lilly, Grandma Sherry and Papa John came up to visit tonight. Ethan was busy playing the computer when they got here. Then, shortly after, we went to our room and he fell right to sleep! Now, it is 10:25 p.m. and he just got up for his 1st of many nightly potty breaks.
We pray that everything will go smoothly this week and we will be home on Saturday.
UPDATE: 8.16.08
On August 6th, 2008, Ethan went in for his monthly check-ups and Sharon, his nurse, had noticed something was not right. (Thanks Nic for dropping that sunblock lotion on E's eye or she may not have noticed!) He had relapsed.
We were devastated. We were thinking so positively and he seemed to be doing so good. So, Ethan had to start over, and more vigorously. On August 8th they were readmitted to the hospital and had a bone marrow biopsy, IT MTX and were then given high doses of chemo (thus needing to stay in the hospital). Ethan and his family were released that Saturday because he took to it very well. The past 4-weeks consisted of having PEG shots in his legs (not pleasant when your 4-year-old begs you not to put the cream on his legs), Vincristine in his port, and 2 Bone Marrows and an LP. The bone marrow from the 22nd showed E was not yet in remission. He still had 7% BLASTS in his blood. They redid the bone marrow yesterday, and it looks promising. Keep praying!
Ethan will need a Bone Marrow Transplant. On September 22nd Travis, Lilly and Jenny were tested because the best results come from a relative. Friday, September 12th, 2008 we found out that Lilly is a match for Ethan!!! YEAH!!! We also found out that Ethan is in remission!! What a trooper!
Ethan will be admitted on Monday, September 15th for a 5-Day Chemo treatment. During that week, his Dr is planning on meeting with Travis and Jenny to determine our treatment plan.
