Ready for round 3.

We came home from the hospital last Saturday and Ashton is doing wonderful! We were supposed to come home on Friday and were in the car and almost to the freeway when we got a call from the dr. to come back. We were set to meet up with an home nurse who would be setting up Ashton's antibiotics-he will be on them until this Saturday for the staph infection. Anyway, something happened and the nurse canceled so we had to stay one more night. It was tough on Ashton, he was so happy to be coming home but he got over it pretty fast.

The dr.s have tweaked his feeding schedule because he was throwing up so much and wasn't able to keep much down. He was being fed all day and night on a continuous feed, but now he is having 4 bigger feeds a day which makes things so much easier, we don't have to carry around all of the equipment all the time now. I love it! He has also started another anti-nausea medication which seems to be working really well. He had such a good day today, almost like old times.

He is scheduled to start his 3rd round of chemo on Monday. I can't believe we are almost half way done. Of course I am concerned about this causing more hearing loss, but compared to the alternative, its really nothing. Please send all the PT's you can to Ashton and pray he has another smooth hospital stay. I will update soon.

Shoes.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each
day I wish I had another pair.
Some days my shoes hurt so bad
that I do not think I can take
another step.
Yet, I continue to wear them.
I get funny looks wearing these
shoes.
I can tell in others eyes that they
are glad they are my shoes and
not
theirs.
They never talk about my shoes.
To learn how awlful my shoes are
might make them uncomfortable.
To truly understand these shoes
you must walk in them.
But, once you put them on, you
can never take them off.
I now realize that I am not the
only one who wears these shoes.
There are many pairs in this
world.
Some women ache daily as they
try and walk in them.
Some have learned how to walk in
them so they don't hurt quite as
much.
Some have worn the shoes so long
that days will go by before they
think
about how much they hurt.
No woman deserves to wear these
shoes.
Yet, because of these shoes I am a
stronger woman.
These shoes have given me the
strength to face anything.
They have made me who I am.
I will forever walk in the shoes of
a woman who has a child with
cancer.
~~Author unknown.

I got this poem from another mom whose son is fighting the same cancer Ashton is.
These boys are warriors! I want to dedicate this poem to this mom, Catherine, and to
Carmen, whose little warrior Ty is back in CA after having intense treatment done in NY.
Also, to Becky, Kim, Eileen, and Grace, who give me such hope.
We all wear these same shoes.

Ashton continues to get better but we will be at the hospital until his white counts recover.
Each day he is looking more and more like himself...a little bit at a time.

Good news, Bad news and Mothers intuition.

The good news is Ashton woke this morning and the first thing he said was "I had such a good sleep, Mommy." He is looking much better and acting better. Not back to his normal self completely, but definitely better then yesterday. The bad news is the dr.s all came in a few minutes ago and confirmed to me that my mothers intuition was right on. He has a staph infection that started from the sore on his nose and went to the blood. They said they think we came in just in time. If we would have waited, things would NOT be good. They started him on some heavy antibiotics yesterday, the kind that are made to fight staph, this particular kind. They are going to watch him very closely and do a blood culture each day to make sure his infection doesn't go to his heart, or any other vital organ. The dr. does think he has turned the corner though because his heart rate is back down, his fever is down, and the sore on his nose is less red.

They took his feeding tube out yesterday because of the sore, so today he had to get another one in, on the other side, and it was tough. He is doing better now and is playing with a dr. who came in to check him out because he has been just sitting and staring in a trance like state. He is playing now though and wearing rubber gloves.

Boy, I don't know how I'm going to get through these next few months. I wonder if there will ever be a time between chemo's where he doesn't need to be hospitalized. I sometimes wish, as hard as it is, to just be able to stay in here until he is all done with treatments. Please, everyone, send us prayers and positive thoughts that Ashton will overcome this infection and get better soon.

Back in the Hospital

Ashton and I are back at LPCH, He got a fever this morning. We will most likely be here until his white counts go back up which could be anywhere from 2 days to a week. I have to be honest, I'm a little scared this time. We don't know what is causing the fever and he is just not acting like himself, he's a little off. He is really tired and right now fell asleep in a totally weird position. He is laying face up like he fell asleep looking at the ceiling and normally he lays on his side. I don't know, it could be nothing. My intuition is telling me something isn't right. He also has a high heart rate, around 160. Its at 170 when he is upset. Normal should be around 120. They think it could be because he is dehydrated, but he has had alot of fluid so far and it is still up. Also, he has a skin infection on his nose. His feeding tube was irritating him and the skin around it got really red and swollen and started to bleed when we were in the ER today. He is on 2 antibiotics so hopefully that takes care of it, but I am a worrier by nature and of course I'm worried he has some flesh eating super bug that won't react to the antibiotics.

I have come to realize that I will never be the same in any ER again. I think I really truely have anxiety problems when I am in them. I just couldn't rest today and kept thinking at any minute Ashton was going to have a seizure or some other type of episode. He was acting weird and sleepy and his eyes couldn't focus on me at one point and they started to shake a bit. The nurse saw it and called in the dr. who checked him out and his eyes were ok. But I got that horrible feeling in my stomach again, just like I did on Nov. 12th. The dr. said that if it happened again he would have a CT scan. I can't wait for this chapter of our life to be over with. I have lost 12 lbs so far due to the stress, and I'm eating more then ever. Please keep those positive thoughts coming...help Ashton get over whatever it is this time and get home soon.

A day of transfusions.

We went up to LPCH yesterday for Ashtons second dose of Vincristine. He wasn't scheduled to have his blood drawn until today-Thursday-but he had been really sleepy and pale. Tuesday, on his birthday, he was in such a deep sleep I couldn't wake him up. Needless to say that was really scary and caused flashbacks to the day we found out about his tumor and he was in a coma. He did wake up when Carter came in and tickled him, I didn't see it, I was in a panic in the other room calling his dr. But everything was ok, only the dr. thought he should have his blood checked the next day instead of waiting. Good thing because his white count is zero, and he needed a red blood transfusion AND a platelet transfusion. We were up there all day. It does seem to have done the trick, Ashton is happy and playing right now. I am so worried he will get a fever though....I don't want to have to be in the hospital again, although, if that happens, I will just go with the flow--of course!

So, before his appointment, his dr. met us to talk about the hearing test results from the day before. She was concerned, more then I thought she would be. She said we had three choices, 1. go ahead with the normal dose of chemo next time, which his protocol says is ok to do only she and the team of dr.s are more conservative about this. Her suggestion was 2. lower the dose of Cisplatin because it will definitely cause him more loss next time... a lower dose would not be as harmful. Or 3. Stop the Cisplatin all together. I really don't want to do that. I want him to have as much chemo as he can tolerate...I wouldn't be able to live with myself if I stopped him and the cancer came back. So, we decided then and there to go with number 2, and just cut the dose back. It was really surprising to me that this hearing loss happened so fast and she was concerned, but she did say it was expected and this was normal. They want to make sure he doesn't loose the hearing he needs for his word development. This is just all so scary, but necessary. He is feeling good today and doesn't seem to be nauseated, which is such a relief!

We have four days off from the hospital, yeah! That is unless he gets a fever. I feel like we are on vacation! :)

Yesterday, I asked the dr. about the chances of this tumor recurring. She said it was the same as the chances of long term sucess, which is 40-60% I was shocked! I thought they said 65-75% cure rate and I had been thinking that all along!! My spirits were down immediately after that, but she told me once again that there was no reason to think he wasn't going to be fine and those are just numbers. Still, I dwell on stuff like that...I want answers and I know there is really no way to know what the future holds. It sort of brought me back down to reality...in the back of my mind I am always thinking that we are at this place in life just temporarily and that things are going to be just fine in a few months. I guess its some sort of denial. Funny how I can start to take things for granted again. I really thought that could never happen. Its healthy for me to think positive though, I just can't imagine anything else. But I do need to remember that each day is precious that he is here, that all the kids are here.

I should mention that those percentages above are not children who are in the study that Ashton is in. He is the first at Stanford. They don't know the numbers for kids on his protocol. Lets all hope and pray that they are better!

Today Ashton is 4.

Today is Ashton's 4th birthday. I am feeling a bit sad at the moment, wishing we could celebrate it like we did last year. He is sleeping right now and has been feeling pretty icky lately.
He finished his second round of chemo on Saturday and really, he did pretty well. I think he tolerated it much better then last time. He is definitely feeling it now though. We went in Tuesday afternoon and stayed 4 nights. It was a longer stay because it took a long time to hydrate him enough to start the chemo. I will say it was a tougher round for me but not because of Ashton. They put us in the ONLY shared room on the ward. We were put with a teenage girl and her lunatic father..it was a nightmare. I won't go into much about it but they did end up moving out of the room and were replaced by a MUCH nicer family. I'm keeping my fingers crossed that we don't have the same type of situation we did this last time again. Things like that just shouldn't happen at Stanford, and believe me, I complained and filed a report.

Ashton had another hearing test this morning and the news isn't what I wanted to hear. He has some slight hearing loss. It is only of high frequency sounds so it won't affect his speech, but it is sort of sad to hear this news, especially on his birthday. I figured it would eventually happen but wasn't prepared to hear it today. They will be on top of this now and it could stay the same or it could get worse...we won't know until after his next chemo. It isn't reversible. We go up there again tomorrow for his 2nd syringe of Vincristine, the one chemo given on day 1 and day 7 of the cycle. Thursday he will be getting another blood draw and the dr. is thinking he will most likely need a red transfusion. Lets just all keep our fingers crossed that Ashton stays healthy and doesn't develop a fever while he is neutropenic, which would mean another hospital stay for us.

Happy Birthday Ashton, next year will be much better.

Home and not feeling well.

Ashton got discharged Tuesday the 31st. We were in the hospital almost 2 weeks! During our stay his nausea was pretty much taken care of...he basically felt well most of the time. Since we have been home he has thrown up his NG tube twice, on Wednesday and Thursday. Wednesday I just went to Dominican, brought our own tube, and he was in and out in 20 minutes max. It still is a horribly uncomfortable thing for him to go through, but he did really well. Yesterday, on the other hand, was a nightmare. He woke feeling pretty bad but the feeling wore off by the time we had to go up to Stanford for a blood draw and hearing test--his hearing was perfect again and his labs were great...his white count is way up so we don't have to give him his daily shot anymore, for now. But, on the way home he threw up in the car. His tube came out and was gagging and gagging him, it was awlful. Good thing I was sitting in the back with him and caught most of it in his trusty "bucket". But, the tube was just hanging there and I didn't have anything sharp to cut it with. His eyes were bugging out and he was basically panicking as we were driving down Hwy 280. I made the decision to just put him through more discomfort and gently pull the tube out through his nose. I had to do this so slowly though to be careful not to hurt him, but of course the whole time he is thinking he is choking. Its terrible. But I got it out and then he was fine. We decided to just drive directly to Dominican again because he was in and out in such a short time the day before. Unfortunately, this wasn't the case last night. We waited 2 1/2 hours in the waiting room for a procedure that takes about 15 seconds. Once we got back the wait was another half hour to figure the tube out. They didn't have the right type of tube so Pat had to drive home and get one. It was a nightmare. Ashton went all that time with out his feeds, without his medication, and he should have been asleep in bed. Not to mention he sat in a waiting room full of sick people, ICK! I talked to his Dr. today and she told me I can bump up his medication to every four hours, and that on Monday we will be taught how to put the tube in ourselves. At this point, his nausea is the thing that is bugging him the most. Hopefully the fact that we can give him his medicine more frequently will be a great thing and that darn tube can stay in!! If his platelet counts rise by Monday he will be starting chemo again late next week. I will update again when I can...