12 days...and still counting...

Well, we are still in the hospital. I can't believe we have been here 12 days now. This is the longest Ashton has had to be admitted. Even when he had brain surgery, we were out in 9 days.
It all started with the fever on the 17th, they gave him antibiotics and his fever went away. Of course his fever happened on the EXACT day his white counts dropped so we were told it could be a while before they came back up. Things were going good until he got another fever last week and they had to start another antibiotic. That fever is gone now too, thank goodness. We don't know exactly what they were caused from. When his white cells are down, any bacteria entering his body can potentially cause an infection, so its hard to know if he did have an infection or if it was just viral. Whatever it was, the fevers were keeping his white counts low so that added to reason for our long hospital stay.

I am happy to say that his white counts are starting to rise, slowly but surely. The dr. this morning said we could possibly go home tomorrow if they continue to go up. I'm thrilled!
Of course he will only have about a week break before starting chemo again....I'm hoping this time there are no fevers and the month can go a little more smoothly. I am hearing so many hopeful stories and definitely see the light at the end of the tunnel. 5 months to go!!

Keep Ashton in your thoughts and prayers please as he gets ready for round 2 of chemo.
This stuff he is getting is so potent. My mom asked the dr. the other day why we see other kids
walking around with energy and smiles as they are getting their chemo. The dr. said the stuff Ashton is getting (Cisplatin) is some pretty yucky and strong stuff. The other children we see are getting something different.

Its kinda weird to say this, but I am going to miss this place a little. Here I know that Ashton is getting taken care of, is monitored, and they give him all of his feeds and medications! Once we leave, its all up to me and Pat. I feel very safe here. The only thing that scared me a was a few nights ago at around midnight, I heard a stampede of footsteps running down the hall. Then I heard nurses frantically giving directions to some other people, probably doctors who were arriving. I knew that there was a major emergency in one of the rooms down the hall. I didn't think something like that could happen here, even though there are emergency medications printed out and taped above Ashton's bed, I thought they are there by law, not because we may need them. Shortly after this all happend, our nurse came in and I asked what had happened. She said that there was a "very sick" little girl down the hall, who had been very sick for a long time and she had lost her airway and they needed to intibate(sp?) her. They ended up moving her to another floor, I'm assuming the PICU. I hope she is doing ok. All of these little sweet souls in this ward just don't deserve this, no one does.

Back so soon??

Ashton was released last Friday and did ok...well sorta. After the whole traumatizing experience of having the NG tube placed, he threw it up Saturday and we had to go into Dominican and do it all over again. And If that wasn't enough, he threw it up again Sunday night and had to get ANOTHER one placed Monday. Having the tube pushed down through his nose and into his stomach is so extremely uncomfortable for him, he screams the whole time, but once its in place he feels much better. He had a regular clinic check up Monday, he also had his scheduled syringe of Chemo. The blood test results on Monday came back showing that he needed a blood transfusion, so our short visit turned into an extra long one. We were in the hospital from 11-7:30. But he bounced back and felt much better so it was a good thing. His vomiting has been under control since we worked out a new medication plan....really the only times he has been sick have been the times he vomited up his tube, so just twice.

Now to the good part.....we are back in the hospital for another possible long stay. After I got back from Cassidy's softball practice last night, I felt Ashton's forehead and he was HOT. His fever was 102.2...Pat called the doctor and we were told to come in immediately. I had to come alone because Pat needed to stay with the other kids, but my aunt and uncle met me at the ER here and helped out. He had his blood drawn, x-rays taken, nose swabbed, all these wonderful fun things. I forgot to mention that Ashton has had a runny nose and a cough for a couple of days now....it just got worse last night and that's when he spiked the fever. I knew coming in that any fever he would get means he would be admitted for at least 2 days. In talking to his dr. on the drive up, she told me that if his white count was ok, which it was fine on Monday, and he didn't test positive for a bacteria infection, then he should be ok to go home. Turned out though, and I was totally surprised, but his white cell count was pretty much zero. Definite admission.
By the time we got these results, it was midnight and Ashton was sleeping. They said it would be about an hour and then we would be transferred over to the oncology unit. We didn't get into our room until 3am. I got 3 hours of sleep. Good thing is Ashton is sleeping now and his fever is a little lower due to Tylenol. We cant go home until he is 24 hours without fever and tests show his white cell count is going up. They told us it could be 2 days to a week and a half. I am so disappointed this happened so soon after chemo. I thought his counts would drop next week, that's what they were predicting. They think since he came off Radiation so recently that it contributed to his low counts. So in the last few days he has had a red cell transfusion, a platelet transfusion, and is now hospitalized for Neutropenia (sp?) which means no white cells to fight off illness. He is on antibiotics and we are hoping the fever is just due to the cold he seems to have caught from me. Please think of Ashton and keep your fingers crossed that he will get better soon and we can go home.....for at least a few days until the next round.

Doing much better.

I wanted to update everyone and let you know that Ashton is doing so much better. The last two days have been so different from the first day where he just slept and was quiet and sick.
Yesterday he played and even went for a walk through the halls. He woke up great this morning, happy and his usual self, he just wants to go home. Its looking like we will be this afternoon.......hate to say this, but it all depends on the poop. Unfortunately, this morning, Ashton got another feeding tube placed and it was pretty horrible for him. This was the first time he has been awake while getting one put in. During Radiation he was always put under and thats when they would place a new tube when needed. They gave him a bit of Verced to calm him down, but it really didn't help when they actually put the tube down his nose. It took him a good hour to calm down afterward. He kept gagging and saying he was going to throw up, but it is just the feeling of having the tube in his throat that makes him feel that way. So they now have something called "go lightly" going through his feeding tube. It is a laxative that they give people undergoing a colonoscopy (sp?) Once he goes we get to go home! Its been 6 days, poor guy. I wanted everyone to know that Ashton is doing really well now and I hope he does this great the next 5 times we do this.

Tomorrow we will be receiving a supply of Neupogen shots and I will have to give him one a day until his blood counts go up. I dread doing that...of course he hates it. But, it is a good thing because that means his white cell count doesn't stay down for too long.

I will let everyone know how things are going once we get home. We were told he may not get the sicky feelings until a week after chemo so next week may be a yucky one.
Keep your fingers crossed for us!

The effects.

Let me start by saying that the chemo Ashton is receiving is very potent stuff. He got admitted Tuesday at 3pm and started chemo at about 7:20. They first had to hydrate him enough to be able to tolerate chemo. He then got a push (syringe) of Vincristine--which is very constipating--but it is the one chemo he has had before. Immediately after that he started a 6 hour dose of Cisplatin which is the scary one. Its side effects are nausea and hearing loss...among others. That ended around 1:30 in the morning. Right after that they gave him more fluids at a faster rate to flush the drugs out of his system because they can cause kidney damage. It was nice that he slept through all of that but the next day, Wednesday, you could really tell he was feeling the effects. He slept almost the whole day and when he was awake he would just lay in bed watching T.V. He hardly spoke at all. He did wake up for a couple of hours around 6 last night and watched a few episodes of John and Kate plus 8. I think that kept his interest because the kids are all his age. Anyway at 7:20 he started another chemo called Cyclophosphamide. This one was just given over an one hour time span. This one also has to be flushed out because it can cause bladder irritation. He threw up for the first time after receiving that one. I could tell he was feeling nauseated for a while before. There was a tiny amount of blood in it which worried me, but the nurses said it was OK. So, he receives the Cyclophosphamide again tonight and we stay over again, which wasn't expected, but it's all because of when he started on Tuesday. I guess we should be coming home tomorrow but Ashton needs to be eating and holding his food down before they will let him go. I forgot to mention that he has not had anything to eat since we have been here. That will make it a bit hard to see if he can hold food down....I'm thinking they will have to put the feeding tube back in him which will be a huge ordeal because they won't put him to sleep to do it. I am just dreading it. Also, and this might be a little too much information, but Ashton hasn't pooped in 5 days. This is not a good thing. We are trying to give him laxatives but since he isn't drinking much its a bit of a challenge. They don't want him to get constipated and strain because that could cause a tear in which bacteria could enter his body. That is the biggest threat to him, his own bacteria, not colds or sickness from others.

The latest issue going on is his sodium is on the low side. The are giving him some now in his I.V. The worry with sodium is that if it gets dangerously low it can cause him to have a seizure. They are taking care of that so I'm trying not to worry about it.

Basically this stuff is making my little guy feel pretty icky. He is quietly watching spongebob right now and is definitely not his usual self. I have tried to explain to him that the medicine he is getting is making him feel this way but the medicine will make him better pretty soon. I wonder how he processes that information, it must be so confusing. It still hits me hard sometimes that we are even going through this and that this is my life. Pat and I were sitting here yesterday just not believing that we are at Stanford right now with Ashton because he is getting Chemotherapy and has cancer. It still sometimes comes as a shock.

Carter and Cassidy will be coming to visit tonight and I'm hoping that will perk Ashton up and maybe he will smile for a tiny while. Please continue to think of him and I will try to update when I can.

1st round.

Ashton is starting his first round of chemo tomorrow. We don't know the exact time he is being
admitted, we have to wait for a phone call letting us know when there is a bed available. It could be morning or evening. He, and I, will stay two nights and three days. He gets a 6 hour course of Cisplatin, this is the scary chemo that causes hearing loss. He will also get a syringe push of Vincristine, which he has had before with radiation. There is also another chemo but that one is shorter and I can't remember the name :) After the 6 hour chemo he will get a 24 hour flush of saline to rid his body of the medication. He will also be evaluated to see how he does. We will not be able to go home if he is sick and can't keep foods down or if he gets a fever, which we were told is highly unlikely. They did tell me that his reaction will be the worst these first few rounds, so of course I'm worried about that. We pretty much know these next 6 months will be rocky and we will be in the hospital more then we expected, for fevers, transfusions, blood draws, etc. There is absolutely no set schedule...the 28 day cycles are not going to be. Everything depends on how Ashton is doing and if he is healthy enough to go another round, but that doesn't compromise his cure at all. I will try and post more these next few days...I will have my laptop in the hospital. We got to take a peek at where we will be staying and its really nice. It is a brand new ward and every room is private with our own bathroom, which let me tell you is a great thing! Ashton is also not confined to his room. He can walk about with his IV and play in the playrooms, but I'm wondering if that will even happen. He is still really sleepy from the radiation. Its good to know we have the option though. Wish him luck!