"Crossing t's and dotting i's"

Austin had his blood drawn today to see that yes it was time for blood. Patsy asked how his radiation went. So I told her we haven't started yet but should start tomorrow. Patel did come talk to us to tell us he has talked to Dr. Eng and Dr. Eng is just checking over things to make sure that all his t's have been crossed and all of his i's were dotted. He said it is hard because he respects him for doing that it is we just need to move on. He is glad we did chemo when we did. He expected delay.

Getting blood takes a while so it makes for a long day. But make great to catch up with the nurses and get other things like insurance things into prospective. Oh yes by the way, Austin has medicaid after all. It was the program that he was under that was terminating. So he is covered. They just changed him to traditional medicaid because I was suppose to get something about changing his plan by mail. Which I didn't. So he will be covered by traditional until his new plan we picked for him goes into effect. I just wonder if he is on the best plan. I told the nurses what plan he was on and they said it isn't that great so I am on the phone right now on hold with Medicaid to see about changing his plan. We will see how that goes.

I got a call today from CTRC that they were still working with the plans for Austin. Looks like radiation will not start until Monday. So I am trying to be patient. Tomorrow we have an appointment with Dr. Dowski's office for follow up from surgery. We weren't sure we were going to be able to go to this appointment due to not knowing when radiation would be scheduled. So now we get to go.

Ok well I have been on hold with medicaid for thirty minutes now, so I guess I will set some more and see what they can tell me.

Elizabeth

Treatment presentation...

Sorry for the gap in the blogs. Last week was busy and this week is even worse. I know everyone wants answers of how Austin's days are and where we are in treatment. Our days have just been overwhelming and at nights it is hard sometimes for me to get on here and one, explain everything and two I am just so tired and all I want to do is climb into bed and move on to the next day. I appreciate every one's concern and prayers for Austin. So I apologize for not being more up to date. If you call and I don't answer, it isn't because I am avoiding you it is either I am tied up with Austin or Austin and I are asleep. If I don't call you back it is just because I have forgotten. My mind is not in the same shape as it use to be. It doesn't process things like it should. Once again I apologize. Okay enough about me and more on Austin.....

Friday update..... Austin finished chemo with flying colors once again. We had to stay late to get fluids so it made for a long day. It was sure nice to not have to go to bed with fluids and not have to wake up and change his diaper every three hours.

The weekend...... oh what a beautiful weekend it was. It was so nice outside. I wish we could of played outdoors. I took Austin on a few car trips and boy did he enjoy them. He stayed in PJ's all weekend. I wanted to keep him comfortable as possible. He actually has been eating very well with having to only take a little bit of medicine. Really I am not sure he really needs the Zofran but then he can not speak and tell me if his stomach hurts. So I have to go by his reactions. He has been in the pantry many times this weekend pulling out food to eat.

Monday update....... Today we had our blood counts check with Patel. His white count is not registering. So yes he has it rock bottom already. His platelets were 32 so he had to get a transfusion. His red cells were 9.6 so he will need that transfusion on wed. We scheduled or meeting with Dr. Grimley for today. I had a good feeling we would need a transfusion and Grimley works out of the clinic so it worked out well.

Dr. Grimley meeting...... The meeting went well. He apologized for the cancellation of the last appointment. He explained to me where we are and what the plan is. I will try and explain it to you but it is very detailed and lengthy. I will state information randomly as I remember it. Sorry for that.

Radiation will be for two and half weeks. Grimley and I talked about radiation to Austin's arm. As Dr. Eng did not want to do this because of the possibility of it making one arm shorter then the other. Grimley feels this can be fixed later in life by and orthopedic. So he is going to push to have it done. He feels that the neuroblastoma will react well with the radiation. We asked him if the radiation didn't get Austin where Dr. Grimley wanted then what will happen. He said as long as the disease is stable as it has been from the chemo and not progressing then we can move along with transplant. If it is progressing then this treatment is not for Austin. The transplant will be a safe, non suffering, less pain option to go. This transplant should be easier then his last transplant. It will hopefully be less hospital stay where most will be done on an outpatient bases. Dr. Grimley doesn't think Austin will need a central line placed like we did the last transplant he will just use his port that he already has. The plan is after radiation to do scans, then the following Monday admit him to the hospital and start chemo. Chemo consist of ones that we have seen before like cytoxan and etoposide (VP 16). He will also recieve a medicine giving with the cytoxan called antithymocyte globulin (ATG). This is made from horse or rabbit serum. Yes strange I know. The one Austin will get is the rabbit. This medicine destroys certain of your white cells called lymphocytes. This drug helps the lymphocytes from attacking the new cells in the cord blood. After chemo he will go to CTRC for total body radiation. It will be one treatment. The next day will be transplant day. If he does well he will probably go home the next day. To see if transplant works will take up to two to three weeks. He will have many appointments at the clinic for blood draws for counts, platelet transfusions and red cell transfusions. He will be on many drugs after transplant to help the cells from fighting Austin's body (rejection) and from Austin's body fighting the new cells this is called graft versus host disease (GVHD). The goal in the end is to give Austin and immune system to fight the Neuroblastoma from coming back. It is a cord blood transplant. It is a 5 out of 6 match. Not a perfect match is what they wanted. This is experimental so there are not really any stats to give on it. They have done about three cases. This experiment is only two years old. There are many other details to the transplant but this is basically what is going to happen. He said to expect side effects of just what normal chemo does to him, fevers, neutropenia, rashes, and only a little bit to none of muc0sitis (mouth sores). The time frame from my prospective for transplant looks like last Monday in February or first Monday of march if things go as scheduled.

Right now there is no word on radiation. Hope to hear from them tomorrow. I have a lot on my plate right now as once again I am getting ready to have to deal with medicaid and the state of Texas as they are trying to terminate Austin's medicaid effective January 31st. Yes I know this is this week and I am probably going to go through some hassles as I did back in the summer. In the summer I had to go across town to get a medicaid emergency form for Austin to have treatment. This is all has to do with how Jason gets paid by his employer. The computer program from the state has done this to us before. They give you no warning and makes life very difficult. I have to call many people, fax many things and run all over town to get a paper saying he has medicaid so he can have treatment. At least that is what I think we will have to do since that was the case last time. Oh enough about this. It just makes me mad writing about it.

So hopefully radiation will start Wednesday but he will also need red blood cells too. They went ahead and did the blood cross match so we don't have to wait long for the blood. Sorry for the long blog I guess it goes with the long week to come.

Elizabeth

Still waiting on radiation...

We had chemo today with no problems and it was a much quieter day. The nurses talked to us a little about what was going on with the little girl. They said they almost lost her. How scary!!! Her airway was closing up. But she was at the hospital and was doing fine but wasn't out of the woods yet. Yes we are still waiting on CTRC to call about radiation. My guess is we will start Monday. We will be finished with chemo tomorrow. YEAH!!! I am not sure we will do some more or not. My guess is yes, Patel will some up his sleeve. Austin has been running around non stop tonight. I finally said it is time to go to bed and get hooked up to fluids. He got dressed in his PJ's but didn't want to get in his bed yet. He sat on the edge of the mattress I sleep on. He was still playing. I hooked up his fluids, gave him so Zofran through his line and then started the benadryl. All of a sudden it hit him. He gave me this look like "I am so tired". So I told him to get in his bed and he crawled into his bed and laid his pretty little head down and drifted off to sleep. Oh how I love IV benadryl. Such and easy way to have a child go to sleep. Well off to bed I go too. I hope everyone enjoys the pictures of Austin with his pull ups on his ankles. He is so silly.

Elizabeth

Don't waste my time.....

We didn't have chemo until 11 am today. So it was nice to sleep in. Yesterday while we were gone Traci from Methodist Hospital called. She is the transplant coordinator. She was calling to set up a time for this week to talk to Dr. Grimley about Austin's transplant. I was really shocked to be honest with you. We haven't heard about his transplant from Grimley since the day after he relapsed. I take it and look at it as a positive thing. I felt before that since we never heard from Grimley transplant would never happen. I called her back to let her know that we were only doing chemo on Wednesday and not sure when we will start radiation. She called me back at 8:24 this morning to see if we could come to the clinic to talk to Grimley after treatment. I said yes. She said she would tell him we would be there between 2 and 3. So I called Jason to see if he could get off to come. He wasn't sure but I really wanted him there. Last time it seemed Grimley wasn't very happy that I didn't have Jason there too to discuss transplant. Too I wanted Jason to be there so he could here it all from the horses mouth too. So Jason was able to get the time off. He met us down at the central Market place so we could fast grab lunch. We went up the clinic where our meeting was taking place. When we walked in the door Traci said," Did you not get my message?" I told her no. She said she called Patel's office at 11 and for this staff member to let us know that the appointment was cancelled for today. I said nope she never said a word to us. Jason was very upset. It seems that every time he attempts to come talk to the doctor's they are always not around. Strange. So Traci was trying to reschedule for another time. I told her that I really couldn't give a time due to I never know when radiation will be. Jason told her that he couldn't take off work again. So she is to talk to Grimley about setting up some kind of meeting before or after Jason's work. Don't see it happening. The guy isn't on my favorite list and he surely didn't make it today. I feel my time is precious and I don't like to me messed around with. The little free time we get to spend is valuable to us. So we will see what they come up with.

At Patel's office it was and interesting day. They had an emergency in the office. One of their patients had and allergic reaction to her chemo. To the point where they couldn't wake her up and had to call 911. At the time this was happening I don't think Patel was around. We think he was over at the hospital. When he did hear him in the room we could hear him tell the little girl, "breath, take a deep breath". My heart dropped. I started praying. Later Patel stuck his head in our room to tell us that things were okay next door. I guess he knew we could hear what was going on. I heard Patel at one time tell one of the staff to cancel the EMS. But shortly after that they arrived. I heard the mom on her cell phone tell someone she was okay. The were going to get her stable and then take her over to the hospital. The nurse told us that this was not the first time this has happened to her. The last time they gave her this chemo she did it. This time they gave her premeds and it didn't help. This child needs this chemo. I am praying that God helps Patel find another option for her. I was scared and it wasn't even my child. Austin was asleep in my arms at the time. I kept kissing his sweet bald head and just loving he was with me.

So far we only have chemo at 10:30 tomorrow. No other appointments at this time. We hope to start radiation Friday but for sure we should start Monday. We talked to Patel this morning. He asked me all that Dr. Eng told me and I told him. He felt that when you get any kind of radiation some go to the whole body. He is hoping that the whole body radiation will take care of the rest. He said maybe after treatment if some is still there then they can radiate. We will see. We talked about how during the two and half weeks of radiation treatment Austin will be in the hospital (as what always happens, fever) so they will just transport him by ambulance to CTRC. He did say Austin's eye looks beautiful. We think so too. It started to look good after surgery.

His counts are: white blood count 1.9, Gran. (ANC) .9 (neutopenic is .5 so we are close to being in that zone), red blood cells were 10.3, Platelets went up to 78!!

Small update...

Sorry I am posting so late. I am very tired so this will be short. We had a good day. Chemo went smooth and Austin did his simulation at CTRC fine. It was just like it was before. Brings back memories. They made a face mask which basically pins his face down so it won't moved at all. If you followed Christi's blogs you probably remember Angela talking about how the mask was so tight squishing Christi's face down. But poor Christi was awake and little Austin will be asleep thankfully. We headed out of CTRC and Austin was ready to eat. He has eaten pretty well so far. Thanks to the wonderful drug Zofran. No much else going on right now. We are just very tired. I will update again tomorrow.

Elizabeth

"where are mommy's keys???"

Yes in today's blog you will hear a story about Mommy's keys. Today went pretty well. Austin's counts were ready for chemo. His platelets were 58 and they were suppose to be above 50 to do chemo. Patel laughed and said we are pushing the limit but we have pushed before and been okay. His white count was 3 which low normal is 4.1 so I thought that was pretty good for being up on his own. His red cells are 11.9. So Austin got cytoxin and topotecan today. He stayed awake the whole time for chemo. He watched a few movies and played with his toys for a little while. He mostly enjoyed snacking. We were finished up and in out car by 1:30 and our appointment at CTRC was 2:00. Austin fell asleep before we could leave the parking garage. We then picked up food and ate in the car and was 14 minutes late. Thought they did not take us back until 3:30. Go figure. It was the usual CTRC disorganized but I keep telling myself this is a research center. So you first get asked all the same questions by a nurse, then and resident and then the actual doctor came in. When the intern came in he acted like they couldn't be able to do the radiation. I looked at him like what? But when Dr. Eng came in he was very confident in doing the radiation. He explained that the tumor is very small there and there was less then 1% of him loosing his eye site. The only spot that he wants to radiate is the eye. He feels since they got everything out of the chest that the chemo will kill what is left. As far as the arm goes, he says it probably won't show up on there CT so would be hard to locate to do and if he worries that if he does radiation to his arm it will harm it from growing. One arm would be longer then the other. As far as his eye he said there would not be that noticeable but yes one would be smaller then the other. But you would have to really stare at it. He feels his treatment will take two and half weeks. Tomorrow they will do the CT scan to line it up and make his face mask and cradle. I am not sure they have to tattoo him or not but if they do they will do it tomorrow. Austin saw some familiar faces today and was friendly to some but also didn't like having to wait so long. He remembered where the playroom was and wore himself out playing.

Okay, now for the story of where are Mommy's keys?. While I finishing up talking to Dr. Eng Austin got a hold of my keys and was playing like the exam table was a car. Unfortunately I wasn't paying attention and he decided to stick my keys in the one of the holes at the foot of the bed. All I heard were my keys drop and he put his hands up like where did they go? I figured I would just stick my hand in there and pull them out. So when the doctor's left I tried sticking my hand in there but they were too far down. His nurse came in and I told her what happened. She laughed and tried to get them out. Low and behold they had to call maintenance to open up the bottom of the bed to get them out. Luckily it didn't take the maintenance man that long to get them out. Austin just smiled when they were able to find them. Silly boy.

Tomorrow we will go to Patel's office for chemo at 8:30 and then at CTRC at 12:30 for a 1:00 scan. They will be using anesthesia so we have NPO instructions to follow. He will be hooked up to fluids tonight. So that will help out with out time. We probably will do fluids again tomorrow night too. So busy morning but hopefully will be home late afternoon.

Elizabeth

"daddy"

Yeah that is what Austin called Patel today. "daddy". What a honor I am sure he feels. I said that isn't daddy but you can call him that. Patel says yeah I am like your second daddy. Oh how cute. Ok now, on with the news that I am sure everyone is waiting for......

The scans......the tumor behind the eye is stable. The area where they took out the tumor is very, very minimal. So small you can't see with the human eye. (which we figured) the arm...there something I need to tell you that I didn't post about. While we were in PICU they were taking chest xrays for the chest tube and low and be hold they found a spot on his right arm. The nurse pointed it out to Patel but he acted as if it really wasn't much of anything. I was so worried because once again it was on his right side and too that the tumor they took out was maturing. I didn't want to post about it until we found out some info on it. I found out today it was on the old scans so Patel knew about it. He says it is strange. It is in the bone but not in the bone marrow so it is on the surface. So hopefully we will radiate that. Patel overall was pleased with the scans and so am I. Better then what I expected. He said there was no pneumonia which was a concern if you remember. When they moved his diaphram the surgeon said he could get pneumonia easily. He also said that the lung where the tumor was "stuck" to inflated back to normal size.

Patel is still working on the chemo regiment for Austin. He wants to use certain ones we used in the past because they have kept his NSE down. NSE is a test they run that detects tumors. When he relapsed in was in the 200's now it is 5. So Patel feels we need to stick those chemos because they have kept the NSE down. So more then likely we will be starting chemo Monday just depending on his counts. Speaking on counts, they were very good Patel said. The white blood count was 2.4 and normal range is 4.1 - 10.9. So it is still low but good it is up on it's own. Red blood cells are hanging in there at 12 normal range is 12 - 18 and his last transfusion was a week ago. His ANC is 1,100 and normal is 2,000 - 7,800. Platelets are at 50 and we are hoping he stays that way for Monday to start chemo.

I am to call CTRC to set up Austin's radiation simulation so we can get a move on radiation. Patel wants him to start radiation by Wednesday if they can get it all ready. So yes a very busy week next week.

I think I have covered it all. I hope. If I have forgotten anything I will add in another blog. Austin still feels well. Playing with all his toys and enjoying being home. He was a little cranky when we went to Patel's but once he saw Patel he stopped. Amazing how when he sees him he stops crying. I guess he has realized that Patel is his "guardian angel.

Elizabeth

"home"...

That is what Austin said when we pulled into our driveway tonight. Yes we got to come home!!!! We made it home at 10:45 tonight. The drive was not bad at all. I took the back roads and the access roads and had not trouble at all. Austin was so happy to see his dogs and his toys. He is still up right now checking out all of his toys. He is determined to get around even though he has not walked in days. Oh well he is doing it. Not having really any trouble at all. Man he is strong. Well the nurse called Patel and he said the results are not back yet on the scans so we could go home if we wanted to. I said yes because I heard it was going to be worse tomorrow and besides who wants to be at the hospital when they don't need to be. I figure we will spend more time there later so we would rather spend time at home. So home sweet home we are. We are to make an appointment for Wed for Patel's. Patel works at a different office tomorrow so I am sure we won't find out results from scans until Wednesday. So we need to keep praying and keep out fingers crossesd that all is good. Good Night!!! Sleep tight because we sure will now that we are home.

Elizabeth

The waiting game....

Well they said they would squeeze Austin in at 2pm. 2pm came and went. They did not take him back to MRI until 4:15. He was not happy camper. Around 1:30 he finally fell asleep and slept until they came to get us. They accidentally tried to bring his tray in during lunch which just made him so very angry because he saw the milk on the tray. So I put his favorite movie “Over the Hedge” on and he was happy about that.

They said it will take them about an hour and a half. They are using anesthesia, so he will be asleep the whole time. Then he will recover in the PACU. He will have to be there for thirty minutes. Then we will be back to the room. I have no clue what the game plan is. Especially since the weather is bad. I have my car here so if they say we can go home, we are going since the weather is suppose to be worse tomorrow. Then again Patel might keep us and start chemo. I really don't know. My guess would be stay and do chemo. Really all and all the scans will tell us. If they find any progression then yes I am sure he will stay and start chemo. This could turn out to be a long stay, but we are here and we have to do what we have to do.

Funny thing; you know it is bad when you can direct someone where they need to go at the hospital. These poor parents were clueless to where to find their daughter after surgery. Leave it to me and I will get you there. I took them back to the PACU. I actually found my way out of the maze today down in Sublevel 2. I always get lost trying to get out of there. I ended up on the other side where labor and delivery was but found my way out. I came out a door that I have been wondering what was behind it. Well now I know. HeHe.

Well as soon as I know anything I will post.
Elizabeth

Long day for Austin....

We got word this morning that Austin's scans are not until 4pm. They tried moving them up and they said they possibly can fit him in at 2pm at the earliest. Oh boy Austin is going to be mad. He can not have any food or drink. The only thing he can have is apple juice or water. Which he doesn't drink anything but milk. He is already fussing at me. I am trying to keep him busy with movies and toys. But I can see him looking around for his food tray and his milk. Poor guy. We slept pretty well last night. They have IV fluids going pretty slow. And he has a few oral meds and a IV antibiotic. So all they gave him those all before 9pm. The only thing they did early this morning was vitals and Austin didn't even wake up. So we got to sleep and not really be bothered. A nice change. We will be glad to get out of here. But we are patient. Well I better go entertain Austin. I will update later.

Elizabeth

We have moved...

We are now out of the PICU and in the hem/onc floor (4th floor). We are in the turtle room. Austin was up at 4 am this morning and could not go back to sleep. He tried and tried, so he played a little while and I put a movie on for him. I then put him in my lap and he fell fast asleep. The nurse came in at 6 am to say they have a room on the hem/onc floor for Austin and we would be going shortly. Wow, it is 6 am!!! So I put Austin back in his bed and packed things up. I sat in the chair waiting and fell asleep. They came in around 7:30 to wake me up and told us we are ready to go. So we got over to the 4th floor and settled in. Austin went back to sleep quickly when we got here. It didn't take long for me to go either. Now I can sleep in a bed and not in a chair. Austin is up playing with his toys watching Wiggles, but I am not sure if he is happy to be on the 4th floor or not. Austin seems to be not as happy as he didn't want to take his oral meds over here. He always does so well taking them. I guess we will see. Well I still don't know what time scans are tomorrow. I don't even know if anything is scheduled yet. The surgeon has been in and said his chest x-ray looks good. He seems to be in less pain now. He can go longer without pain meds. So when I know more I will update.

Elizabeth

Still in PICU....

Austin is still in PICU. Not by the doctor's choice but by there are no beds on the 4th floor. This hospital seems to be full. Austin got up a little after 7 to watch his cartoons. He sat up to eat some crackers and has been drinking lots. of milk. They went ahead a took his lead off his chest to give him a break. They are trying to make it a little different for him since he really doesn't need to be in ICU. He is asleep right now. Yes he decided to take a nap today. I don't know what his problem was yesterday. He is ready to play with his toys now so Daddy is bringing toys up today for Austin to play with. I haven't seen Dr. Patel today and I am not sure he will come by. So we are just stuck here. If you think about it though. If we go to the 4th floor this is a very high chance we will have a roommate so really where we are is fine. I am learning to get sleep in a recliner. I will update more if anything changes.

Elizabeth

Austin and Bob the Builder

Austin feeding Bob the Builder a cracker

Austin giving Bob the Builder a hug

Austin had a wonderful day. But boy he never took a nap. He didn't go to bed until almost 10 pm. I never thought he was going to go to sleep. He played so hard I thought he would go right to sleep but no. In fact we have had to give him a bunch of pain meds. He woke up a little while ago and I could get him to calm down. His tummy was hard as a rock. So we can him so more pain meds and now he is resting soundly. His tummy is not so hard anymore. I think he was in pain and it was tensing up in his belly.

The surgeons came by today. Both of them Doski and Cofer. They said he looked great. Moved him to a regular diet. The want to take his chest tube out tomorrow. He even talked about him going home Sunday or Monday. BUT Patel already nixed that. Patel has different plans for Austin. He says we will stay and have scans on Monday. Bone scan and MRI for sure. He will call Dr. Eng over at CTRC about getting things ready for radiation. In between he will put Austin on chemo and this chemo will not drop his platelets. He did find out about the tumor that was taken out of Austin. The tumor was maturing. Meaning it was starting to grow. So it was a good thing that they got it out. Praise the lord! I do have a few questions for Patel on some of the treatment and I was told he was on call this weekend. So I am hoping I can talk to him. When I know more about times for scans and more info on treatment I will let you know.

Elizabeth

Sweet boy Austin

Well as you can see from the picture Austin is smiling and talking. We go over his eyes, nose, mouth, ears, ect. and he actually is saying the words. He can say eyes, nose and ears!!! It took surgery for him to talk?!?! Well we got great news. WE ARE BEING MOVED TO THE 4TH FLOOR. Yeah Austin!!! No more PICU. Although we will miss the staff. He started drinking apple juice today (from a syringe) and now has moved onto milk. I am sure next will be some crackers. He is alert and has sat in my lap twice. It is some what painful for him to be picked up and even changing his diaper is hard. It takes two. He is going potty. Yeah the antibiotics are kicking in. Fun. He is getting blood and platelets today. I have gotten lots of hugs and kisses from him. Too sweet for words. I am not sure when we will be moving but it even might not be until late today or tomorrow. Have to make sure there is a room and he has his transfusions for today. So I will post when we move!!

Elizabeth

Night time update...

Not too much going on here. The finally took out his IVs today and started using his port. For some reason they didn't want to use his port. Austin was so ready to get his IVs out that he helped them. The A line wasn't working (I am sure it has a lot to do with Austin kicking his foot), that was in his ankle. An IV that was in the other ankle we found had come out when there was blood all in the bed. They accessed him this evening but still were using the IV in his hand, which he hates. The night nurse could not see why they accessed his port and were not using it. So she transferred the line from his hand to his port and removed the IV. Boy Austin just made a new best friend. He was so happy to get that out. No all that is left is the chest tube and of course leads and blood pressure cuff and port. It seems his fever is gone. He is congested and it hurts for him to cough. I am sure the congestion is from not moving around that much. He did get platelets today. They were 94 last night and 101 this morning. So the doctor for the afternoon said go ahead with platelets. I just got word now that his blood count came back and platelets are 101 again. I don't how he could of lost that much platelets that fast when he just got a transfusion today, but I guess you can. I am wondering if something got screwed up. The doctor should be coming around soon and I will ask her. He has been awake some today and watches his videos. He is asleep right now, he makes a lot of noises in his sleep and has been jerking a lot. I hope he sleeps better tonight since he got a lot of his cords off of him. We will see what tomorrow brings.

Elizabeth

Morning update....

Austin did okay last night. He did develop a fever and is still wiggling his toe to get the pulse ox off. He has been very quite and that is hard for me. He loves to be loud. Last night he decided to try and sit up and move to his belly. When he sat up he leaned on me. Poor thing wanted to sleep on me. It is too hard for me to hold him right now. He has tubes every where going from every direction. So I just lean in so he can hug me. I hold his hands a lot. He finally did talk to me this morning. It wasn't "mama" it was "woo" which means Wiggles. He pointed to the TV when he said it. He knew the Wiggles were due to come on soon so he wanted to let me know. They just took his temp and it was 100.2 so they gave him some tylenol. He got blood last night because his red blood cells were 8. His platelets last night were 94 but they decided to wait on giving him platelets because the doctor says 94 is so close to 100. This morning his platelets were 101. So they came up on their own. Patel has been by this morning but they didn't have labs ready so he just checked on Austin and wanted to make sure they were not sticking him with needles. He let them know when Austin only moves his eyes and not his body he is in pain. He was actually shocked that I spent the night last night. Why I don't know. I have never been away from him. The only time was at the hospital when he was first born. He slept in the nursery that first night. So I am not leaving him now. He is sleeping right now. He is having a hard time getting comfortable. I would too if I had so many things attached to me. Well I am going to go rest for now while he is resting and I will probably update again tonight.

Elizabeth

Little more info....

Tonight I went back and read the blogs that I wrote today and realized I never blogged about what the actual surgeon said. Boy I told you I was writing those fast. After we talked to Patel Dr. Dowski came out to give the final talk. He said that they got out ALL they could see with a human eye. Of course with the nasty beast neuroblastoma, it leaves molecules that we can not see. We experienced this the first time when we took out the one in his stomach. But we radiated the area to make sure we got it and we will do the same again. He said that there was a sticky residue that they found was on the tumor but said it was common. He said they actually had to move the lung to get it out because with the sticky residue it was kind of stuck to the lung. He was happy he didn't have to make the incision into his belly. Oh yes and they did also say it was indeed a tumor. He didn't need the NG tube in his nose. I am sure I will remember more later and tell you. Everything just happened so fast. Sorry.

He did really well tonight with his oral meds. We are staying on top of his meds allergy and antibiotics he had started before surgery. They are giving them orally here. And he takes them like a champ. He doesn't want to have anything to do with his sippy cup, just pushes it away. But he did let me syringe some water to him.

Well I will update more tomorrow.

Elizabeth

Night Update..

Austin is settled in PICU. He is in and out of sleep. He was very fussy here and there but now seems comfortable. We have the TV on cartoons so he can have some other noise other then all of the machines beeping. We find him waking up watching some TV and then back to sleep. It is different here in the PICU. It takes some getting use to. Put we will survive. They have all been very nice to us. Our favorite nurse "D" came to visit him before surgery and after. I asked her if she got the low down from Patel and she said yes. I asked her what he said to her and what feeling she got from him. She said he was very happy with the surgery and in fact said it went better then he expected. She said he doesn't lie to her. She told me a funny story. She said last night she put her little girl to bed and then went to say her prayers. She said when she started praying for Austin she started crying (while she is telling me this she started crying and me too). She said she balled so loud it woke up the dog. It was funny. She is so good to us. She is so honest with us too. We have a lot of support here at the hospital. Austin's PT and OT are the best. They always come and check up on us and keep up with everything that is going on. These people are just like family to us. They stay by our sides and when they see us down they lift us up. Thank you for everyone's prayers and support. We really could not do it without you guys. Power of prayers is truly amazing. I feel that not only Patel scrubbed in today, but God did too.

Elizabeth

HELLO!!!

Patel just came out!!! they got most of it out!!!!! and they are stiching him up right now. So he will be in ICU for awhile and then hopefully moved to a regular floor. They are checking his CBC to see if he needs platelets and blood. Patel's response was energetic so that tells me everything looks good. Sorry if I have been misspelling words. I am typing fast and not really doing spell check. Every time I get a blog done the update me some more!! Ok I will update later.

Elizabeth

Update.....

We just got an update. To our surprise Patel came out in scrubs. He scrubbed in. You go Patel!!! He said Dr. Dowski was rolling his eyes at him. Patel said he is stable. Three fourths of the tumor is isolated. They are having to make another incision to go at it at a different angle. The tumor is laying on the vertabrate. He has a chest tube, IV in the foot, NG tube and a foley. They have three units of blood waiting and his platelets are 160. He said he will need blood and platelets. Surgery should take another hour and a half. The feel I got from Patel was things are okay. I still feel good about everything. It is going to be a long haul but we will get through it. I will update in a little while

Elizabeth

Delay, but we are in....

Well Austin is back there but they didn't take him back for until a little after one. He played for hours and did so well. Then a crew came in. Patel, Patsy, Dr. Dowski, nurses and Austin at first was fine but then they decided to access him which the nurses thought they would not do. So Patel came and did it. Without numbing cream. So yes he screamed but then Aunt Amanda put wiggles on and that settled him some. He then fell asleep. He stayed asleep when they took him back.

Dr. Dowski sat down and talked to me about where the tumor was and that it was in a place that was hard to get and depending on if it has spread would tell him if he could remove what he can. That is the goal to get out what we can. He said I goes up his stomach into his chest. Laying next to the spine. He will be in ICU for 5 to 7 days. They will have to push down his diaphragm so it could cause him to later have some trouble with breathing. All in all he said the surgery is very risky. I know he is in good hands. We have only gotten one update that so far everything is going as planned.

I will update again later.

Elizabeth

Preparing for the big day

Well it is 8:41 P.M. at the Akin household and we just ate a late dinner. We don't usually eat this late but we are trying to keep Austin's tummy full since he can not have anything to eat or drink after midnight. Of course you all know what he ate. Yes you guessed it Chick-fil-a. Hehe. Mommy is trying to get all geared up for the stay but I don't seemed to know really what to take this time. I think there is a big chance he will be ICU and I don't know what that is like. Last time he got to stay in PICU. That was similar to our stays on the fourth floor. So no I don't know what to expect. We did end up getting platelets today. A whole unit since we are having surgery. His nurse at the clinic is still in shock about the surgery being tomorrow. She keeps just shaking her head. Well I guess I better go and get things done for tomorrow. I will have my computer so I can update through out the day. I hope to be able to keep everyone informed. Until tomorrow.

Much needed Prayers tonight and tomorrow.

Elizabeth

Where do I begin....

We went to Austin's appointment today with hopes of finding out more about surgery. Patel said that the surgeons are now not sure about surgery. The risk involved and not sure the can get the tumor out. I told them I felt if they could just get some out I would be happy and asked "isn't that what Dr. Eng wanted, just to get as much as they could?" and he said yes that is what we just need. But he just wasn't sure this was all going to work since we only had this week to get it done. Here it is Monday and no word on surgery. Patel says well if they can't do it then we need to just move on to radiation, we don't have time to spare. He checked his counts and they are all good except for platelets. They were 38. So yes he will need platelets. We made out appointment for Wednesday and went about out way. At 2:17 the phone rings and it is San Antonio Pediatric Surgeons. They have an opening for 11:30 on Wednesday for Austin's surgery. WOW. We went from nothing to boom, it is scheduled. The lady said that Dr. Dowski wanted a certain surgeon to be the assistant and the spot came open. Dr. Dowski is on post call but took the opportunity to do it. Yeah!!! The ball is now rolling and it sounds like it is in our court. I knew there was a reason why I hadn't posted a blog yet!!!! Good things come to those who wait!!!

So here some icing to the cake. My window in my car is not working. We have a warranty. It expires in February. HMMMMM.. What a great time for this to happen. So since we just had tomorrow to get it done I called and they said they could do it. Luckily our warranty pays for a rent car but he said the THINKS he can have a car for me, they better have one. I have to go to New Braunfels to take it. So that was set. Well then it dawned on me that his platelets were 38 today and I figured he would need platelets on Wednesday and thought well that isn't going to work he will be in surgery!!! So I called Patel's office so they could ask him if we needed to go into tomorrow to see if he needs platelets (which I am sure he will need to). So now we need to go there tomorrow too. Oh what a busy day we will have. I will have to figure out how it will all get done, but all and all it will get done.

Thanks for everyone's support during these times of needs. I don't know what we would do without you guys. All the comments and emails keeps me going. The blog is very therapeutic for me.

Sorry for Austin's website for being down. I am not sure what is going on and Uncle Alan isn't available for right now to fix it. So as soon as he can he will or hopefully it will fix itself. Sorry. Do remember you can get to the blog by going to www.austinakin.blogspot.com

Elizabeth

Changing order in the Treatment...

We found out today that Austin will have the surgery first. Dr. Eng said he wants them to debulk first and then do radiation. He will not only have radiation to the tumor behind the eye but to the one in the chest as well (or where it was). Surgery will be next week. I don't know the details yet, still waiting to hear back from Patel to know the date and time. We are having to move fast on everything. Austin's counts are coming up and we don't want to waste time. He also told us that if Austin is still in the hospital when it is time to do radiation and they will have an ambulance take him over to CTRC to have radiation. No time to waste as you can see. He will have radiation and chemo. Then after radiation and chemo we will move into transplant. Once again it will be right after he recovers from the radiation. He says if there are any delays he will have him on chemo to make sure nothing comes back. His words today were,"My goal is still number one CURE, and we are still in this fight and we are going at it strong."

Counts are finally coming up but still are lower then yours and mine. So he is still on his neupogen shot.

When I find out more details I will post them. Have a great weekend.

Elizabeth

Austin's Game Plan...

Well we finally got to talk to Patel. What a relief it was. The game plan he proposed is as follows: Tomothearpy radiation to the tumor in the orbit of the right eye along with chemo. After he recovers from radiation and chemo then we will surgically remove the tumor near the lung. There is no surgical option for the tumor behind the eye. So we must pray the chemo and radiation gets it. Then we can move on to transplant. But remember all Neuroblastoma must be gone to get to transplant. We have some long months ahead.

At first when we were taken back to and exam room, Austin saw a TV in the rooms across the hall (the treatment rooms)he immediately ran in there. I tried dragging him out of there but Patel said, no that is okay we will go in there to him. He said he was working on the treatment plan for Austin and would know everything today. He knew that radiation was in the works for the eye tumor and surgery for the chest tumor. But when was the question. He was trying to decide to do chemo when his counts recovered to make sure we stayed on top of everything while the plan was being made. While we were there he got a call from Dr. Eng over at CTRC, he said he could have him come in Monday at CTRC to start the planning of radiation and start radiation next week. So that is when Patel decided to do the chemo with the radiation. So next week will be a busy one. I know the questions that will be coming in will be how long will he do the radiation but I won't know more about that stuff until after speaking with Dr. Eng. I am going to find out Friday what type of chemo Patel plans on giving him. We know what to expect over at CTRC. I am sure Monday they will sedate him, do CT scans, and make his mold for radiation. I know this time they will probably use a face mask to make sure he doesn't move during treatment. Last time they didn't use one, I think it was because he was only having his stomach done.

I feel good about this treatment and am ready to get started. I think the new year will bring us a positive outcome in Austin's treatment.

Today Austin got Platelets, they were down to 30. His white count has come up slowly. He is still on the Neupogen shot and he goes back Friday at 9 for blood drawn. His red cells are holing their own at 13. ANC was 600. Patel went ahead and put him on a bunch of antibiotics for his finger to be on the safe side. So we will start that tonight too. When we went to get platelets at the clinic, as we walked in Austin's nurse "D" was standing at the nurses station, she saw him bent down and put her arms out for a hug. Austin hesitated for a minute but then started walking pretty fast toward her and gave her a hug. He doesn't typically do this to nurses but he sure knows that she loves him and he loves her too!!

Elizabeth

Come on Counts...

Austin's counts are slowly coming up. They are still very low. But at least they are not a big fat zero. We go back tomorrow knowing he will need platelets. They didn't want him to go to the clinic today with counts that low being exposed to flu and RSV since you have to go through the hospital to get to the clinic. Today Patel was not there and Patsy didn't have any new treatment plan information, which I figured. We do know Patel made a call to a surgeon and to Dr. Eng who was Austin's Radiation Oncologist. This is the doctor we have seen at CTRC for radiation to the spot where the main tumor was. I am not sure if Patel thought of it (I am sure he was) but I mentioned this to Patsy on Thursday before we got out of the hospital as a possible option for his tumor. So she said she would talk to Patel about it. She wasn't familar with it. Patel was very worried about Austin having radiation to his stomach because he was afraid of radiating other parts of his body. With Toma therapy (which CTRC is the only place in San Antonio that has this machine and they have only had it a year now) they can target very small areas without touching other parts. So this may be an option. We will see. Hopefully we will get to talk to Patel tomorrow. Another big thing that Patsy and I talked about was his CT scan he just had. Patel and Patsy both didn't not feel that the results were written correctly and Patel has requested them to be redictated. She said it basically said No change but no mass. Which they figured it meant no change in the existing tumors but no new tumors but said it wasn't very clear. So hopefully we will know more about that tomorrow too. We go back tomorrow at 9 and I am sure we will be going over to the clinic to get platelets. Patsy is also watching a spot on Austin finger. She thought it might be herpes once again but I told her that either the day we had to go to the hospital or the day before he hurt is finger and I don't know how. I just saw some skin missing and it was bleeding only a little bit. I never could find where he hurt it. He never cried. I cleaned it up and when we were admitted to the hospital I showed them the cut and they said nothing. It is taking a lot of time to heal and I guess she is worried about infection. So we have to soak it in Epsom Salt and but a prescription cream on it. We will see how it does. Well I can't believe it is Tuesday and tomorrow is already the middle of the week! hehe
Happy 1st birthday to Cousin Emily!!!! I can't believe you are one already!!!!
Elizabeth