Counts, Counts come up where ever you are!!

Austin taking his nap for today.


Yes we are still here in the hospital. Austin's counts are still down. Patel came in this morning and said they are coming up. Where he saw that I don't know, but he is the doctor. He said GOAL is to go home Friday, but that doesn't mean we will. If we go home with his counts too low, we will end right back here. Rather just stay and stick it out. So we will see what tomorrow holds. I am NOT thinking we are getting to go home. But we can always have hope. But what ever is best for Austin is what is best for us. When Patel came in this morning Austin was asleep, like he always is. Patel really wanted to see his eye, so I rolled him over. He was VERY pleased with it. So am I. It has gone down a lot. Yes it is still somewhat there, but like a nurse told me it isn't noticeable. So if you look at it, going through this is worth it seeing the outcome of the fast response. Patel also didn't like that they didn't access him in both of his ports. He said he was having trouble getting the correct amount of fluid Austin needs. So he wants the nurse to access his other port to run more fluids. This was 8:15 this morning he told me this and it is now almost 5:30 and they have NOT accessed his second port. They came in here to just weigh him with the wrong kind of scale and woke him up from his nap. I asked why they were weighing him now and the guy told me because they didn't weigh him this morning. I said yes they did. He said well does he not like the scale. I said he is trying to take a nap. So he went to go ask the nurse and came back and said she said it was okay not to weigh him. What happened was someone screwed up. They always weigh him at between 5 and 5:30 am. I do remember him getting weighed this morning. Oh well. Then the nurse came in and said we still need to access his port so let us know when we can. I felt like saying why didn't ya'll do it earlier??? When he was awake all those hours!!!!

Sorry I haven't posted more often. There are some days where it isn't a good idea that I post. It would be nothing but bad words. I don't know if you can tell or not, but is taking me a long time to write this post, and I add more and more things that happened. (like the weight and port issue) LOL. Honestly I have gotten very frustrated this time around. But trying to deal with it the best way I can. They are pretty full on the floor, or so they tell me. So when you look out our window (which faces the nurses station)you see no one. Last night we had a little incident in our room. The nurse came in to hook up his antibiotic and Austin was up playing. After she left I looked down and notice there was blood in his line backing up. I didn't freak out because I have seen this happen before but then it started coming out a valve they use to inject meds or piggy back other lines. It was all in the bed. So I called the nurse in. Our nurse was in another room so they sent another nurse in. It is a night nurse that we really like. She was stunned at what was going on. The only thing she could do was clamp it off and start over with new tubing. What apparently happened was there was a hole in the valve and blood and antibiotic was just coming out. So they had to clean up the bed, change the line and start over with new antibiotics. They also found a crack in this cap that connects the line to the line to his port. Oh what a mess.


Austin playing with the light stick last night. If you look closely by his leg where his ID braclet is you can see the blood start to back up in his line. Right after I took the picture I saw the blood and called the nurse.

So Austin is asleep right now, but soon I will make them come in and access his other port. They said the would de-access his other line and let him have a bath and then they will have to put numbing cream on and access them both. He will not be too fond of having a sponge bath. He hates them. He will scream.LOL

I had some hospital visitors today. A couple of Patel's staff came by as they were leaving from bringing a NEW patient to the floor. Then our social worker came by and we had a nice long chat. Then a little later the nurse that worked at Patel's office, stopped by. She works on the third floor clinic where we go get transfusions. Of course I talked my head off. Since I don't get a lot of adult conversation in. LOL Well I am going to go now. Jason should be here in a few minutes with dinner and hopefully Austin will be up to eat and get accessed again. Poor little guy!!!!

Elizabeth

Still hanging out in room 32!!

We are still here and plan to be here for a little while longer. Austin's counts are still way down. The fever is gone but he is still on antibiotics until his counts come up. Sorry I didn't post yesterday but Austin didn't feel very good. He woke up from his nap screaming and nothing was calming him down. They had to call Dr. Patel and he ordered some Morphine to calm him down. We think he was having a headache. They didn't want to give him tylenol because then if he did have a fever they wouldn't know. Thankful it wasn't a heavy dose, it was just enough to put him in his happy place. He wakes up at night crying but as soon as I put his fluffy Wiggles blanket on him he stops. When he sleeps he sweats. He and the bed are always wet when he gets up. But he still insist on having that heavy blanket on him. He didn't eat all day until about 7 pm tonight. Right now he is watching his portable DVD player. The only thing that keeps him sane. He took an hour nap earlier but then fell asleep around 3:30 this afternoon. He needed platelets today and along with that comes benadryl. So he slept until about 7. He probably will be up late tonight. Oh boy. I took a cat nap earlier so hopefully if I have to I will stay up with him.LOL.

I talked to Dr. Patel yesterday and he said he will do scans when his counts start coming up. We will be doing more treatments with the Temodar. Today Patsy came in. She said his cultures have been coming back negative and he will stay on antibiotics until his counts come up to be sure. We hoping his counts start bouncing back fast. They rate they are going right now we could be here ten days or longer!!

Elizabeth

Sunday Post....

Austin eating dinner tonight. Yes that is ketchup on his head. Thanks for the Wiggles tray Diana and Angela!!!


There isn't too much to post today. Austin is feeling a little better. We think the fever is gone. I think he is having some kind of pain. Not sure. The night nurse and I think when he urinates it might burn. It seems to bother him a lot at night. He is very clingy tonight. He keeps waking up and having me hold him. Then he passes out in my arms. I mean dead asleep in my arms.I go to lay him down and he cries but is still asleep. If I get up he knows and starts to cry. Dr. Moore, the on call doctor that admitted Austin, told us the earliest we could get out would be Tuesday and we could stay up to ten days. It all depends on no fever, cultures come back negative every day, counts go up, eats well, drinks well, and is going to the bathroom okay. So we will see. Tomorrow is his last dose of the Temodar. Of course we think more then likely there will be other rounds of this drug with some time in between like chemo. We will hopefully find out more when Patel comes back tomorrow. Austin is eating some still. He doesn't drink as much as he usually does but he is still drinking. He actually was on his normal sleeping schedule here as he does at home. He misses his dogs. He saw a dog on TV that looked like abby, he said "hi abby" then he started crying. Poor Austin. I hope we don't have to stay here much longer. His big thing right now is to tell everyone "no", and shake his head no when saying it. No is clear as can be. I will ask him if he wants milk and he says "no" so clear. How he is growing up so fast. Well I better get to bed and get some sleep. I am sure Austin will have me up to watch cartoons early tomorrow.

Elizabeth

Fever Strikes...

Austin started running a fever this morning. It spiked to 101.9 this evening so it landed us at Methodist Children's Hospital. We got her about 8:00.Austin was pretty punky today. Austin is watching his videos right now (Wiggles of course) singing and dancing along with it. So we probably will be here a few days for antibiotics. I will update tomorrow on everything. We are just hanging out trying to get settled in. It doesn't usually take us long to get in the hospital routine.

Elizabeth

Below Zero

No, that is not the temperature outside here in San Antonio. That is Austin's blood counts. Sad to say they took a big drop. That's what chemo will do to you. His platelets was in the 40's so they went ahead and gave him a transfusion since the medicine he is on eats up his platelets. We were lucky they ran his transfusion fast and Austin slept through the whole thing. So now we wait and pray for no fever. If he gets a fever he gets admitted to the hospital. So isolation is tight right now. Other then that he has been doing really well. We had a wonderful Thanksgiving with all of our family. Austin had the best time playing with his cousins. We were very thankful for yesterday. We go back to Patel's Monday for blood counts. I am sure we will have to get another platelet transfusion some time next week. I will update again Monday.

Elizabeth

Happy Thanksgiving!!!

Sorry I didn't post yesterday. We were so busy getting ready for today. Austin's appointment went well. His counts looked good. His platelets a red cells were holding up. His white count is still low but not too low. He is still on his shot. Patel is now putting austin another treatment. He came up with a treatment after doing some research. The drug is called Temodar. It is used for brain tumors. Patel specializes in brain tumors. He was on the team that researched this drug for brain tumors. In Europe they are using this drug for neuroblastoma and he says they are getting good results. He told us it would take about three years for them to start using it in the United States. It is a capsule form so I have to put it in apple sauce. We give it to him for five days. We started it today. I had a hard time getting this drug. There is a story about that but I won't post it so the pharmacy won't get in trouble. HaHa. The side effects of this drug are fevers and possible upset stomach. So Patel has me giving Austin tylenol and Zofran before he gets this medicine. Austin's appetite has gone down a little but he still eats some. His energy level is still very high. So every thing looks great and we go back for blood counts tomorrow at 10:45. Patel's office is open half a day. Well we have to go get ready. Hope everyone has a Happy Thanksgiving, I know we are very thankful for this day!!!

Elizabeth

Bye Bye Chemo!!!!!

Gizmo and Austin sleeping together this morning

Austin in his bed this evening. Can you guess what he is watching?? Haha

Chemo is over. Thank goodness. We had fluids, chemo and platelets. We got home the same time we did yesterday. He did well. It was nap time by the time we had platelets. They give him benadrly so he slept the whole time. We had to wake him up to leave and he cried. We go back tomorrow for blood counts and hope we don't have to get anymore blood products. His port is still accessed so no bath tonight. I will update tomorrow after our doctor's visit.

Elizabeth

One more day of chemo!!!

Yes, one more day left and it is going to be a long one. Today was long as well. We had chemo for an hour and a half at Patel's (we were there for about two hours)and then Austin had to get a blood transfusion. (we were there for three hours). Tomorrow will be the last day of chemo but he will also need platelets. The thing that stinks about tomorrow is they didn't send us home on fluids. The nurse asked and Patel said no. I started to think about it and said why not, because tomorrow we have to go get platelets so it is going to be a long day. The nurse said, he didn't say he needed to. Then she understood what I was talking about, we will have to do fluids when we get there. Then she told us she needed the pump through out the day is why we couldn't. Well that stinks. Wonder what they would have us do if we did need to go home with fluids. Oh well. We will see how it goes. He did well today. Watched cartoons while he got chemo and then he slept the whole three hours while he got blood. He ate four chicken nuggets for lunch and seems to be tolerating the milk fine. We just got home so now he is playing with all of his toys he missed today. He has seemed to be in a VERY good mood today. He played with all of the nurses today. Had long conversations with them too. At Patel's office when they call you back you first go to a station to get weighed, measured, blood pressure and temp. Austin has learned where to go and the order of these things. Patel took him back today and said I only need a weight. So Austin got on the scale. Then he got off and backed up to get measured. Patel felt bad and laughed and said "I guess I better measure him". Over the weekend when we met Patel up at the office he would go run to the scale and Patel would tell him he didn't need to. Silly Austin. While getting blood he likes to help out by giving his leg to them for a blood pressure and holds his arm up so they can take his temp. Then when all done he claps. Oh boy has he been in a good mood. He even woke up from his nap in a good mood. So tomorrow we go to Patel's at 9 and get chemo and then go for his platelets. We will go home with his shots again.

Elizabeth

Three down, two more to go!!!!

We met Patel this morning at 9 am. Was no big deal getting into the office. In fact there were other people there in the building. He started his chemo and had to run over to the NICU to visit a three day old baby. So he left us there while he got chemo and got back in time to change the chemos. We were only there for an hour and a half!! You go Patel!!!! We gave him fluids at home starting at 7:30 last night and I kept them running this morning, that way it was easier for Patel. We will do the same thing tonight. He said that worked well. Why didn't they think of this last time? LOL. Today he stayed awake during the chemo and watched TV. He had fun coping Patel. When Patel would put his hands up so did Austin. Austin is in that copy mode. Patel said that he was increasing the Topetecan (the new chemo)for the next two rounds. He says the nurses will make a big stink about it tomorrow because they will tell him that is not what he has written down but he says you go with what is best for the child. He says that he doesn't want to make him sick but he may have to. Just meaning he is not having the side effects so he able to increase the dosage. So yeah no side effects now but tomorrow we expect to see some. Once again Austin is doing well. As you can see from the picture he is watching the Wiggles and dancing. He has got some new dance moves. So he will have fluids through out the night again and we go back tomorrow to Patel's for chemo at 9. They told us that they will be very busy. Even though it might not take a long time it may be crazy because they will have so many patients and only one nurse. No more one on one with Patel. LOL We are thankful that he accommodates his patients so well. Thank you Dr. Patel. WE LOVE YOU!!!!

Elizabeth

Another day of chemo....

We met Dr. Patel at this office for chemo. It didn't take long at all. We came home with fluids to run during the night while he is sleeping. I am going to try and have them run through the morning until he gets his chemo tomorrow. We don't know what time chemo will be tomorrow as Patel has to set it up with security to come open the building to let us all in. Once again Austin slept through chemo. He must think that is what you do when you get chemo. LOL. So far no side effects. Still eating and drinking well. Energy level is still high. He has been playing all over the house. Into everything. The picture I have enclosed is Austin on his Zebra bouncing. I say "bounce, bounce, bounce" and he bounces away while he giggles. You can also see his bruise on his forehead. He went to lay his head down on his tiger couch and missed and hit the floor. I noticed today the corner of his eyes has the bruise again and he hasn't hit himself. I wonder if it is the tumor moving or something causing the bruise. So, so far good. I will update tomorrow.

Elizabeth

Surprise!!!!!

Yeah we had a big surprise today. Austin got chemo!!!!! Patel came in and said, "Austin will be getting chemo today and over the weekend." WOW!!!! You go Patel!!! He made a decision that we need to go ahead with it. So we go back Saturday and Sunday. He gets five days of chemo. Patel said that way he will be done for thanksgivig. Things are different though. Miss are nurse Dolores giving him treatment. He didn't get benadryl or the steroid and they didn't send medicine home to push through his port. Everything is orally. Stinks. We will see how he does. I am thinking of asking Patel tomorrow why. It it will be hard to give him oral drugs every 6 hours when he is asleep. I use to get up and give meds through his port while he was asleep. It kept him from throwing up so much. So far he is doing well. He got two chemos today and one is new to him. Patel says it will give him diarrhea. He says all of them get it. That should be fun!!! He slept through the chemo part and then woke up for lunch and ate all of his chicken nuggets. He has to drink lots of fluids and can't take a bath because he is till accessed. (Thank goodness I gave him a bath last night) He won't be too happy with not having a bath for five days. So we had a LONG day. We left the house at 7:45 this morning and got home a little after 5:00. So once again we are beat.

Elizabeth

What a long day

We had a long day due to needing platelets. They were down 15. While we were getting platelets we noticed some swelling in his right side of his face. His lip was fat. There were no rashes so the nurse sent us back to Patel' office. We waited and waited. They said Patel was at the hospital. They finally called him after he hadn't shown up. He wasn't planning on coming back right away so Patsy described over the phone the swellings and Patel said he already knew about it. He said even the lip. I think he is confused because the lip wasn't like that. Yeah there is still swelling on Austin's temple which we know is the tumor. He did mention that this morning. It seems to be coming down. So I think it either had to do with the platelets or the steroid. I am no doctor though. So we didn't get home to after 3:00. So we are pretty worn out. We left the house at 8:30 this morning. We go back Friday and hope his platelets have stabilized. We will see.

Elizabeth

No blood products today......

Austin's counts are pretty stable. He still has his shot that he has to take but we found out today that it also helps keep the platelets up. Patel is trying to avoid having transfusions right now. He says we need to see what his body can do. We did find out there is a change of plans in his chemo. We do NOT have to go into the hospital for this next round of chemo, we are able to do it outpatient and Patel is working on when we will do it. Should be next week. So yes he will more then likely be having chemo on thanksgiving. So hopefully no hospital stay this time. Patel said he will get back to us on details, that he needed to look at a few things. Austin is doing well. He has now figured out that some of the rooms at Patel's office has TVs in them and wants the staff to put him in those rooms so he can watch TV while they do his counts. Silly boy. Well I will update Wednesday for any details that Patel gives us.

Platelets??......Why yes!!!!

Platelets were down to 33 today so with the weekend coming Austin got platelets. Patel called to let them know he was coming and then came to tell us the "inn" was full so he needed to wear a mask. He also reminded us to wash or hands. I thought this was strange that he was telling this to us, if he only new of all the lysoling and purelling we do. So I told him of course we will wash our hands. So we go over to the clinic. The clinic wasn't too bad, we were in the main transfusion room and there was only one other child there at the time. The nurse that was at Patel's was his nurse for today. She told me she talked to "Mahendra". She said after she got that Austin was coming she called him back to find out if his counts were down. She told him that all of the private rooms were full with "dirty" kids and wanted to know if he would be okay in the main room. Patel told her that the counts were okay. I laughed when she told us this. Now that explains why he said wash your hands, because of the "dirty" kids. LOL. The day wasn't too bad as far as time. The platelets got there fast and Austin slept once again through the whole thing. His white count is still down, so we have his shots for the weekend. No fun. I think the steroids he get with blood products is getting to him. He had this horrible tantrum this afternoon. We had to hold him because we were so afraid he was going to hurt himself on the floor. We go back Monday for counts again. His red cells were stable so hopefully they will stay that way. So this weekend will be another spent inside. Have a great weekend.

No blood needed today.....

Today Austin didn't need a transfusion. Patsy didn't think he would need one the rest of this week. Yeah. His counts are still low. I was surprised his platelets were only 90 after having a transfusion. His red cells only went down .2 so that is great. Patel was not there today so we didn't get to see him. Everything else looks good. Austin is back to eating and drinking normally. His activity level is still high and the bruise on his eye is starting to go away. Yesterday he got to see his great Aunt and Uncle from out of town. He had a blast playing with them. He played the shy game for a little while. Today he is watching his new Doodlepops DVD. We are so tired of Wiggles so I got him the Doodlebops which is his second favorite. Well we go back Friday for another blood count. Hope everyone has a great rest of the week. Take care.

Elizabeth

Platelets are 10??!?!?!?!

Yeah Austin did need platelets. They went down to 10! That is so very low. When we got to Patel's office he came out in the waiting room to look at Austin and of course the first thing he looked at was his eye. He also said he looked pale and thought he needed blood, and asked what I thought. I told him platelets is what he needs. LOL. And yes he is neutropenic (where he doesn't have white cells to fight off infection). They also ordered a chest xray to check on the fluid in the lung. Patel specifically told Patsy to request a "portable" chest xray if we had to go get platelets (which we did)So while we were in the transfusion clinic (which was extremely busy) I asked if they would come up after his platelets or before. The nurse told me that we would have to go down to radiology for it. I said I thought Patel ordered a "portable" xray? She said the orders did not say that. I told her I didn't see Patel letting him go down to radiolody with his counts being so low. I heard him say "portable". So she said she would check. Later on when his platelets were finished and another nurse came in to turn the pump off and I talked to her about it and she said she would look into it. She left the door open and we could over hear her talking to the PCA and sounds like they read orders for a portable vertical xray. Mom heard this too. When our nurse later came in she told us that the orders did not say portable and that they just now requested so we would have to wait awhile. We had been there three hours, you would think they could have this better organized. Luckily they came up fast. So who knows what the orders said. We didn't get home until almost 3:00. We go back on wed and possibly will need blood. That is a longer wait and takes longer to give it. So we will be there probably about four hours or longer. Yuck!!! Oh well. Got to do what you got to do. Well, we will update later.

Elizabeth

Friday update.....

Sorry for posting so late. Austin's Friday appointment went fine today. His counts are still hanging in there. We figure he will need platelets by Monday. He still doesn't feel all that well. I still have him on his benadryl and zofran by my choice. He has had a hard time finding something that taste good so we have gone back to baby food. The texture and taste are just right for him right now. The only other thing he likes are pretzels and any kind of bread. We are still trying to get him to drink more but it has been a real battle. I went and bought some soy milk to see if he would drink that but no hope for that yet. Hopefully over the weekend he will get better. We are trying to keep it low key and quite with rest. So if you don't hear from us that is only why. Sorry. Just trying to get him strong and back to more himself for so we can move on to the next round. I will try and update over the weekend but if not I will for sure do it on Monday.

P.S. Please pray for our friend Cooper's scans to come out "clean". He had scans done today and are waiting on results. We are praying for you Cooper!!!!

Elizabeth

We're Going Home!!!!!

Yep that's right Patel said we can go home. It will be nice for Austin to be able to run all over the house. He is driving us crazy about wanting to run all over the hospital room and he can't. We have been up and down through the night, not because he was sick or anything, just got woke up when staff had to come in. He woke up at 5 am and we stayed up to watch the Wiggles and then went back to sleep. Then Patel came in at 7:30 but only I got up at that time. So they are working on our discharge paper work but I am sure it will be a while. He already got his shot and I haven't even started packing to go home. There is no way I can with Austin trying to get out of the bed.

Patel said that Austin's LDH was up to 900 but that is what he expected. His platelets were up to like 74 and red blood cells at 11. Wow they are holding their own ground. I am sure some time next week he will need blood or platelets. Well I better go and try and see if I can pack or do something for us to go.

Elizabeth

Long night......

Austin fell asleep last night early but then woke up around 10:30 pm and was up until 2 am wide awake. I myself was wide awake. He threw up once last night. It was a little amount. To my surprise Austin was up at 8 am this morning. I thought he would sleep longer. They just gave him some benadryl so maybe he will take a good nap. He is not up for much eating and drinking. He doesn't want milk so he sips on soda. He ate a few cheetos and is now playing at the window with Nannie. He saw two air life helicopters this morning. The picture I have attached, is from this morning.

Patel came in at 8:30 this morning. He said that there was a screw up on his medicine and the nurse didn't give him manitol after his chemo. Manitol helps him pee out the chemo, but he said he did have his fluids. What upsets me is that is why we are here at the hospital, to have the combo of manitol and chemo. I talked to the nurse this morning about this and she is trying to do some research on it. She thinks it was from two nights ago. I don't know how Patel knew about this. Two nights ago, we were fast asleep so I have no clue. Patel also said that his LDH level was high but that it was good because that is telling us the chemo is attacking the tumor. He said his LDH was low before chemo. Also the fluid in the right lung is gone and it just is wet in there. He said he is hoping to send us home by the weekend. We will keep our fingers crossed. I do see the swelling down and Patel reminded me that last time it took two weeks for it to go all the way down. So we are keeping positive. Monkey is right up against me sleeping with his "blankie". I wonder if he stayed up last night because he didn't have his blankie. He blankie got sent home with Nannie to be washed because it got chemo pee on it. One other time at home he didn't sleep well at night because his blankie was in the dryer. Once he got it he seemed to go to sleep. We will see how he is tonight.

Elizabeth