Happy Halloween!!!

Austin says Happy Halloween everyone!!!! He seems to be in a good mood again today. He likes watching out his door window looking at all the nurses in their costumes. He has backed off his eating some, but maybe that is because the hospital sends the wrong food and sends it cold? Have you ever been served cold green beans??? Yuck. We asked for dino chicken nuggets (which they have) and fries. The sent cold chicken strips and cold soggy french fries. I tried them and there were gross. So Nannie is off trying to get food. But Austin just fell asleep. LOL oh well. He is still drinking his milk. Still loves getting down and roaming around his room. He has learned to push his own IV pole around. So cute. We decided to not dress him up in the costume we had originally were going to do, instead we had some monkey ears and tail he got for Christmas from Nannie and Pop. So I have attached some pictures for everyone. The one with the pumpkins was his original halloween card picture that I was going to use, but time ran out. So here they are.

Elizabeth

Better day.....

Today Austin was in a better mood. He played a lot at the window and has figured out how to get out of the bed. Oh boy!!!

So I guess you want some news?!?!?! Sorry I didn't update sooner, it is hard with Austin trying to get around. Right now he is eating so I am able to. Patel said the CT did NOT show the tumor around the eye to have gotten bigger. He said he does see the "puffiness" and possible that the tumor has moved. They did find fluid in his right lung. They are watching that with chest xrays. No need for a tube right now. A nurse told me that could be caused by the chemo. Chemo does strange things. I did find out he will have another round of chemo according to Patel. He said next time we will do chemo in exactly three weeks, no waiting for counts to go up.He was worried this would push us into holidays but I told him I didn't care and Austin doesn't understand the holidays yet anyway. We need to do what we need to do. He did talk to Dr. Grimley about the cord blood transplant. So I think Grimley is getting things rolling on that. Austin eye is still "puffy" looks the same to me if not larger. So we will see. Austin is eating still, a little at a time. Chicken nuggets and fries. Still drinking his milk and no vomiting yet. He gags a little but that is all. Right now he is watching the wiggles and playing with a spoon. He was attempting to eat applesauce but decided it wasn't for him. I will update tomorrow.

Elizabeth

Short update.....

Sorry I haven't posted sooner. Austin has been a handful today and haven been able to sit and type. I thought I would write a little update before I go to sleep. He did well with his chemo last night. Slept right through it. He had a CT scan done today without sedation. He was not a happy camper about that. Once they strapped him down he kicked and screamed. We had to call our nurse from the floor to come give him another medicine to relax him. With that and some milk they were able to get the scan. Hopefully it will turn out okay. We do not have the results yet, hopefully early tomorrow we will know. Austin has gotten really bored so I have tried to keep him entertained but hard to do. Jason took some pics of us playing in the bed. Austin kept putting the "throw up bucket" on my head. Lovely. He is getting chemo as I type (started at 11). Yeah I know I am up late. But this is the only time I have to myself. I will update again tomorrow when we find more out. Thanks for all of your prayers and support.

Elizabeth

Weekend took a detour......

Not my choice of places, but we are at Methodist Children's Hospital. Last night Austin woke up around midnight crying and screaming. I would rock him back to sleep and put him back to bed to find him on the monitor tossing and turning. Finally after many attempts I put him in the bed with me. I gave him some milk as he seemed to be thirsty and thought it would solve the problem. Little did I know it would create a bigger problem. After drank his milk, he tossed around a while and then sat up and threw up all over me. So I bathed him, gave him some benadryl and Zofran, and we set up tent out in the living room to watch cartoons. He tried and tried to fall asleep again. Once again he sat up and threw up for the second time. Poor thing. So cleaned him up again. We watched wiggles for a while and he kept wanting to sleep on top of me which he hasn't done in a while. We woke up here and there. I gave him another does of Zofran and slept until 8. When he got up he ate breakfast and did fine. I didn't offer any milk through the day. Just to be on the safe side. He went to the Alex's Lemonade Stand that was held in honor of him. But he just didn't seem his self. I had funny feelings all day as I watched his eye. Well I hate to say this but the swelling in the side is back and the eye is bulging again. Looks the way it did when he first relapsed. So I called Patel. He said this is not good. I told him about the eye and the swelling and I had these funny feelings again. (he knows what I am talking about) and he told me that he looked at his head yesterday and didn't see it back but that he is going to go on my feeling because you can not ignore it. He also said lets start sooner then later. So here we are at the hospital and chemo just arrived and they are preparing it and getting his premeds. I am sure we will talk to Patel in the morning. Not sure he believed me as to the swelling because he kept calling the nurses and having them run in to look. That's okay, I didn't want to believe it either. So he will have chemo through the night. He already feels sick to his tummy so we might have a long night. He is just now trying to drift off to sleep as I write. I will update tomorrow.

Thanks for everyone's support on the lemonade stand. It was a huge success. Glad we could make that.

Thanks to Aunt Amanda, Uncle Jerry, Aunt Jenn,Uncle Alan, Grandmama, Pa, Pop and Nannie for your hard work and donations for the lemonade stand.

Elizabeth

Guess who is going to be at the lemonade stand?..........

........................Austin!!!!!..........................
Well Austin's counts look good enough for a free weekend. Free of isolation. We still have to be careful but he is able to go places an be a little boy!!!! What a great time to have a free weekend when there is a lemonade stand!!!!!!! And yes, it is time to start treatment. We check into Methodist Children's Hospital on Monday at 10 am. We took Austin everywhere today!!! We are so worn out!!! We went shopping for some winter clothes, did some shopping at Sam's and had lunch. What a nice day it has been. Austin and I have enjoyed every minute of it. Patel suggested going by a preschool and picking up some chicks. LOL But I think shopping is better!!! So this weekend we will try and cram in getting out but also being careful because I don't want him to get sick before treatment either. It has been a month since Austin got out. I think that is the same amount of time we had to stay in after transplant. The longest we have ever had to.

Also a reminder on the lemonade stand tomorrow Saturday from 11-3 at Windcrest City Hall. For more details check yesterday's post!!!! We hope to see you there!!!!

Elizabeth

Get your Lemonade!!!!!

Aunt Amanda is setting up a Alex's Lemonade Stand in honor of Austin in Windcrest, Texas. We hope all can attend to help support childhood cancer!!!!

Alex’s Lemonade Stand
In honor of Austin Akin

Date: Saturday October 28, 2006
Time: 11 a.m. - 3 p.m.
Place: Windcrest City Hall parking lot

8601 Midcrown

Windcrest, Texas 78239

If you are unable to join us and would like to donate; please visit:http://www.firstgiving.com/austinsfight
For more information on Austin and his fight; please visit:http://www.austinakin.blogspot.com/

Thank You for your support.

Fighting Childhood Cancer One Cup at a Time!!http://www.firstgiving.com/austinsfight

Austin is going to kick cancer's butt!!!!

This banner is from a Myspace friend.

Austin did very well with his blood transfusion today. He watched cartoons, ate McDonald's chicken nugget happy meal, played with the nurses and took a good nap. We didn't get home until after 5 so we are worn out. Or at least I am. I think Austin feels good with his new blood! So hopefully we will go Friday and it will be time. Hope every has a good rest of the week.

Elizabeth

Waiting to get Blood

Yes we are sitting here over at Methodist Children's Hospital Clinic to get blood for Austin. It takes a while for them to get it down to the clinic. Luckily today we got our own room in the clinic. So Austin has a bed to take his nap. We knew today would either be platelets or blood. His heart rate was up since his blood level was down but surprisingly enough his platelets were up. His white counts came up some too. Platelets went from 32 to 52. Red cells went from 9.5 to 8.6. White count granules went from .6 to 1. So we wait. So hopefully be beginning of next week he will be ready for chemo. Austin is playing and watching cartoons. We got up late this morning so we picked up McDonald's for breakfast and he just ate a few Cheetos. He loves cheetos. Messy though.

Through Austin's website I met a mother of a little boy that is two weeks younger then Ausitn diagnosed with Neuroblastoma Stage IV too. He was diagnosed at the same age. Two weeks and half weeks later then Austin. Can you believe that? His name is Cooper and he is going through the antibody study right now. His mother and I are in the mist of catching up on the boys treatment. It is strange how I have been looking all over the internet for someone Austin's age and stage of disease and instead they find us!!! Ever where I turn I see Austin's story and pictures are on a lot of people's myspace pages. How wonderful how we are getting his story out there. Thank you everyone for your support in helping me get Austin's story out there.

Right now we will wait for blood and then be here for a while for his transfusion. We go back to Patel's for blood count check on Friday at 9.

Elizabeth

Chemo still on hold

Austin's counts are still low. Too low to start chemo. Platelets are back at 32 even after having a transfusion Friday. His red blood count is getting low too. So looks like he will need transfusions this week. Patsy said possibly start chemo at the end of the week. But Patel says next week. So we are home in isolation still. Waiting. Waiting for chemo to start. Waiting to move on. Waiting for this disease to go away and never come back.

Elizabeth

Typical Friday

We did indeed need platelets. They went from 32 to 22. His counts are still down. Waiting for them to go up to start the next round of chemo. Once his counts are up then he will be admitted in the hospital to start treatment. Patel said it will be some time next week. He was VERY happy about the bone marrow. He says the new cells are there and they look beautiful. When he got his CBC back he said,"I guess the new cells don't want to come out." What he means is he sees the new cells in the bone marrow but they are not showing up on his CBC so he feels they are hiding. His white count (ANC) is 500. Which means he is almost neutopenic (right under 500 ins neutopenic). Neutopenia is when you don't enough white blood cells to fight off infection. So there is a higher chance of him getting an infection. So once again he is on HIGH isolation. No new visitors, and if you have been sick OR if you have been around someone who has been sick you can not visit Austin or anyone who is around Austin. We need him well so we can move on to his next treatment. So yes we will stay indoors this weekend. He is still unable to go anywhere. We go back to Patel's Monday at 9:00 a.m. Hope everyone has a good weekend

Elizabeth

Bone Marrow Results

Austin and his new Wiggles bedding!!!












The bone marrow results came back and the bone marrow is ........................... CLEAR from cancer!!!!!!!!!!!!!
Way to go Austin!

Bone Marrow Aspiration

Today at Patel's Austin was scheduled for his bone marrow aspiration. When we arrived I was told that they would do it no matter what, even if his counts were down. So they prepped him for his procedure. His white count was up but his platelets were down again to 32 (thinking he will need platelets on Friday). I decided to stay in there with Austin although last time it wasn't a pleasant site but I felt I have seen it all. I haven't left his side for anything other then stuff he had done where I could not attend. It went very well. To me the experience was better then last time. Must be because I knew what to expect. He grunted a lot and Patel didn't seem to have trouble getting the marrow out. After taking one side he told his nurse to give Austin some more of the sedation to really put him out. Afterwards they kept his monitors on for a few minutes and I sat there talking to him. He seemed he was going to come off the table so I picked him up and held him. I told him it has been a long time since I was able to hold him like a baby. He laid still for me and I rocked him. Patel then came in and said here let me take him and carried him into a suite for recovery. He says he likes to carry the kids since he doesn't get to do it very much. I felt this is very sweet. He truly loves these kids with all of his heart. He fought laying down for awhile and then all of a sudden he fell asleep. He slept for a good hour and I whispered "MILK" in his ear and he woke up and drank milk and ate crackers. He was very "drunk" acting and was that way for at least an hour. When we got home he tried to go about his playing but was falling all over. We had to try to contain him which was just about impossible. I even tried to get him to lay down with me. He decide against that. So now as I type he is just going about his playing. I am the one that needs the nap. He is still a little wobbly. But refuses to sit down.

I know the next question on everyone's mind is "when will you know the results?" Patel said he should know today. Now for us finding out, I am not sure. They may call us at the end of their work day. I am pretty patient about finding out. I have a good feeling about it and I look at it as if it is not out then we will get it next round.

I hope that answers everyone's questions and I will try and post the results as soon as I know. In the evening it is hard for me to get on as it is fussy time for Austin and time for me to get dinner ready. After dinner I get Austin bathed and ready for bed. Will post again when we get news.

Elizabeth

Haircut Pictures

Aunt Amanda

Aunt Jenn

Uncle Alan and Austin

Internet Friend who has a little boy Austin's age

Mommy and Austin

Shave it off!!!!

That is what Patel said today when he found out that Austin's hair was falling out in chunks and shedding everywhere. So I did. Hard for me to do, but I did it. I also shaved Gizmo's hair off too. The little stub that he has left will fall out on its own. Uncle Alan too, shaved his head last night when he saw how fast Austin's hair went. So if you feel the need to shave your head or cut your hair short for Austin go ahead. The way I look at it, it is just hair and it will grow back. I plan to cut my hair short some times this week. If you do shave your hair please send us a pic so we can post if you would like us too.

Counts are still down some, so he still needs his shot. We are going to try for bone marrow aspiration on wed. So we go in at 8:30 wed. That is really all that is going on. No other news. Austin is watching his Wiggles right now (what else) with Gizmo.

Elizabeth

Bye Bye Hair

It is so hard for me to watch everyday more and more hair gone from Austin's head. I know it will grow back, but it is so hard to see it go. The first time he didn't have really any hair so it didn't bother me. I really didn't think it would bother me this time, but it does. Giving him a bath this morning I saw a lot of hair floating in the tub. Today he snuggled with me and was rubbing his head on my face and I had to tell him to stop because he was rubbing and his hair was coming out. I literally got hair in my mouth. It doesn't seem to bother him though, he has been just going and going and going. He seems to be very happy. I got pumpkins for inside and he was so excited. He loves the little ones. He carries them around and places them all over the house. I took some pictures of him and he is back to saying his "cheese". I got out the tripod and he loved that. He now pretends that there is a camera on the tripod and takes pictures saying "cheese". Oh he is so silly. He has not once asked to go outside to play. He is enjoying all his toys inside. From time to time he will ask to watch the "woo's" which means the Wiggles. Lately he has been kicking and throwing balls (almost time to enroll him in soccer and T ball). We go back to Patel's tomorrow so I will post again tomorrow. Have a great week!

Elizabeth

"Beautiful scan Austin", said Dr. Patel

"Beautiful" is the word Patel used this morning describing Austin's latest CT Scan. He said the radiologist was so excited about Austin's scan he called Patel immediately. Patel said when he looked at the scan he nearly fell out of his chair.

We were not able to do the bone marrow aspiration today because Austin's counts were too low. Instead he got platelets. Platelet count was down to 28. He is back on his shot for the weekend and we will try again for Wednesday for bone marrow. Another change is Patel has decided to admit Austin for his next round of chemo. Which I was just going to question if that would be a better option since he had such a good response. Some of the drugs Austin received in the hospital Patel is unable to provide him on the outpatient. There just wouldn't be enough hours in the day in out patient anyways. I feel this would be the best for Austin too. My answer to him saying sorry to me was, that is okay. I won't have to cook, clean and can stay in my PJ's all day and hang out in bed with Austin. He laughed and said then I feel good about the decision then. As soon as he recovers he will be admitted to start his second round of treatment. We are already packed and ready to go. We pray he doesn't get an infection or fever in the mean time.

He got to eat as soon as we got to the clinic so he was very happy. And is now finishing his lunch watching cartoons.

I am getting sleepy........

Austin did well for his CT scan. He actually fell asleep before they gave him the sedation. He started talking to the nurses when he figured out where he was. We think he associates pedi prep and hold as a place to take a nap. CT was scheduled for noon and they took him in at 11am.Yeah!! To our advantage there was only one kid in the pedi prep and hold so Austin didn't have to wear his mask in there (he wasn't planning on wearing it anyways). After his scan, Austin decided to take his nap. We sat there probably for an hour until he finally woke up. To my surprise he actually drank some apple juice (only a little). Yeah Austin. So we got to go home. We stopped at the Chick-fil-a (have I told you before that is Austin's favorite?!?!LOL) and he was excited. So he ate ALL of his chicken (6 nuggets) and some fries (guess I would eat that much to if I didn't get to get breakfast). When we got home I noticed Patel's office called at 1pm. I called back. The news is, everyone sitting down???? IT RESPONDED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Way to go Austin!! Next we will have a bone marrow aspiration Friday (8:30). Then we move on to chemo the next week. I am feeling so good about our news. I am getting ready to go get Austin a surprise for being so good. I will get one for Friday too. Poor thing has to get sedated again. I have great feelings about everything and this CT proved to me that they may be true!!!


Elizabeth

Change in the Game Plan

Patel's office called today. They couldn't schedule his scans until the 20th and Patel said that was too far out. So they got them scheduled for tomorrow. We will do the bone marrow aspiration on Friday. So tomorrow our day will start at Patel's office at 9:45 where they will access him and draw blood for his counts. If needed they will give him his shot. We will then go to the hospital's radiology department at 10:30 for his 12:00 scans. Friday we will go to Patel's office for bone marrow aspiration at 8:30. Today Austin is doing very well. Trying to get back on schedule with his sleeping. So far he is almost back on schedule. He is working on saying some words. He says "bye", "dog","cheese", "mama", "Dada", "woo" (for the wiggles),"ball", "Moe" and is working on saying apple. One of Patel's exam rooms has apples all over it. So he points up and tries to say apple. When we are in the other rooms he looks for the apples.

The Fight for his Life

A Myspace friend made this banner for Austin and I wanted to share it with the blog supporters.

Counts are down

Today's Austin blood drawn showed Austin's white count are VERY low. So we will have tighter isolation and back to our shots. This was not a surprise for me. Patel said that it was okay. So WASHING hands is the number one priority in her our house. Purell is good but washing your hands is the best. We wear no shoes in the house but I am looking into getting some socks for people to wear because I read an article that people's feet could be just as dirty as there shoes. Yuck! If you think about it is very true. So I am going to provide socks for when people come in. Even if they are wearing socks they will need to take theirs off and put the ones we provide on. If you think about it the inside of your shoes could be dirt and so your socks get dirty. It is all logic. I know this is a lot to ask of people but we need to think about Austin and his health. He has no white counts to fight infection. So if your going to visit him these are the rules. Sorry. We go back to Patel's on Wendesday for bone marrow aspiration,and now he has bumped up having a CT scan before the next round of chemo. They still have to get insurance approval and then schedule it.Have a great week.

Elizabeth

Look I am a big boy!

Austin is doing great. He is keeping up with his eating and drinking. He is enjoying playing and hasn't really fussed about not going out. This afternoon I went to the grocery store and Jason stayed home with Austin. Well, Austin put himself down for second nap in his fold out couch. Wow he is such a big boy! We go back to Patel's tomorrow for blood counts and to see if he needs a shot!! Yuck! LOL I will post tomorrow. I will post tomorrow. Have a great week!

Elizabeth

Dr. Austin Akin

Yeah the day finally came that we needed platelets. I woke up this morning already with the feeling we would be getting platelets today. Just one of those mother feelings again. When we got to Patel's office today there were quit a few people in the waiting room. Patel came out and sat and talked to Austin. He asked if he was next and I had no clue. He laughed and said why don't you know. He went and looked on the sign in sheet and then said come on Austin lets go back. I feel that Austin might of been the only kid there that he felts counts could be down so he needed to be away from them. Also too Austin took his mask off and gave it to Patel. So that could be a reason too. He said something about what we were doing this weekend and I told him nothing. He said why not. I told him Austin counts. He looked at me puzzled but I already new. Counts would be down. And they were. So yes Austin is stuck inside for the weekend.Patel did say he could play in the backyard. Didn't say he had to wear a mask but I am going to try and get him to. He is fighting the mask, so it is very hard. Platelets were low enough to get a transfusion. We didn't mind going over to the clinic so much since we got to see our nurse friend (Delores). She instantly said the swelling is down. That made me feel good. She is a very honest person. She will tell you like it is. He pretty much slept through the transfusion since they give him benadryl. He did wake up once screaming. We tried everything. Took his shoes off, took his shorts off, changed his diaper, checked his port and gave him milk. We later heard and felt him expel some gas. So more then likely that was it. He did finally drank some milk and ate some crackers. On the way home we got him some Chick-fil-a and he was pretty happy. Now he is playing with the laundry. Putting shorts on his head. Oh what a silly boy. This should be a quite, nice weekend. I plan on getting my house in order and playing with Austin. I have been going through his toys. Since he got a lot of new ones when he was in the hospital I have been packing up some that he doesn't play with anymore. Well I better go get to cleaning. Have a great weekend!!!!

Elizabeth

Morning update

Hey all,

Austin seem to be eating more. So maybe his taste buds are coming back. He ate a good dinner. He got up at 4 am this morning asking for milk. We tried to go back to sleep but he sat up and threw up all over the mattress and himself.I put the everything in the washer and put him in the tub. He still didn't seem like he felt good so I gave him some benadryl. After his bath he watched the Wiggles (what else) until the benadryl kicked in and he went to sleep. He woke up around 7 or so and came over the couch were I was sleeping and put his head on the couch and went back to sleep. So I put him back on his little fold out sofa and tucked him in and back to sleep he went. This morning he ate 8 silverdollar size pancakes. Right now he is watching the Wiggles on Disney channel. I am waiting on my mom to come over to help me give him his shot. Fun! There is no way I can give it to him by myself anymore. I can't even get him to sit still for a diaper change.Well that is all for this morning I will update later.

A year ago today.....October 4, 2005

Today marks a year from the first diagnosis. This picture you can see the lump on his head. He was a sick little boy. Who knew a year later we would be battling again.

We went to Patel's office this morning. Austin's counts looked good. No need for platelets today. Yeah Austin! He got a shot and I have to give him one tomorrow. We go back Friday for counts again. Patel and I feel the tumor has gone down. I noticed yesterday that his eye looks more back in socket. He felt it and said yes indeed it has down beautifully. We will do bone marrow aspiration on next Wednesday and then the following week we start chemo again.

Austin has been feeling pretty good. Still frustrated about having to wear his mask and about not going out to play. But overall he is doing well with it. He has a hard time finding something that taste good. Last night he didn't want to have anything to do with his chicken nugget so we ran up to McDonalds for a cheese burger happy meal. He thought he wanted it but then spit it out. So he then tried a french fry. He said "mmmmm" so that means it tasted good! So he ate all the fries. He didn't want to go to bed last night he wanted to stay up and play. So he wasn't very happy with me when I told him it was late and he needed to go to sleep.

Funny Story...... Austin sleeps in a toddler bed and I have a twin mattress on the floor up against his bed where I sleep. Last night I had lysoled some stuff animals and put them on my mattress. I put Austin in his bed to got to bed and but the video monitor on. I wasn't really paying attention to the monitor as I was still cleaning. I later looked and said oh he moved his head to the end of the bed. Many times I checked the monitor and saw him there sleeping. When I decided it was time for me to go to bed I went in the room and to my surprise Austin was on the mattress and he had put all the stuff animals in the bed! So I had been watching the stuff animals and not Austin. Ha Ha! He fooled me! Silly Austin!

Elizabeth

Would you like to go home today?

Would you like to go home today? Was the question Patsy ask Austin this morning at 8:30. So yes we are home! Austin played with all his toys when he got home. He didn't want to take a nap, afraid he would miss something. So a forceful nap was made. He loves his new Wiggles slippers which he is wearing around the house right now. Too cute. So back in the swing of isolation. Tonight should be nice and quite. No 4 am weigh ins, no 5:30 am blood drawns. Just nice quite sleep. Since we have been home I have been cleaning the fort. I tackled Austin's room first and then put him down for a nap and then while he was sleeping worked on the living room. So hospital life isn't so bad. You don't have to clean or cook. You have room service, maid service and you can lay in your PJ's all day!! Ha Ha! We are glad to be home though. We go back to Patel's tomorrow. He didn't need platelets today so there is a chance he will need them tomorrow so we may end up in the clinic. That is okay we will get to visit our favorite nurse Delores. Delores use to be Patel's nurse. We fell in love with her. We hadn't seen her since right after transplant. She came to visit Austin and we just hugged and cried. She said to him, "oh bug!" We had lots of hugs and cries from a lot of our nurse friends and staff. They are so good to me there. Thanks Methodist Staff. We last saw Patel on Monday afternoon. I want to end with his last comment to me. "We're going to WIN!"

Elizabeth

Going Home Tomorrow

Posted by Jennifer

Just a quick update... Austin finished his last dose of chemo lastnight for this first cycle. Dr. Patel said that he is doing well with no serious side effects from the chemo and that he doesn't see why he won't go home tomorrow. He thinks that he might have to receive a platelet infusion before he goes home, but other than that, he is tolerating treatment very well so far. We hope that you enjoy the pictures, Austin has learned to blow kisses and say "Cheese" in the last few days... he entertained us all tonight... what a fighter!! I am sure Elizabeth will be posting tomorrow, but we wanted to let everyone know that it looks like Austin will be coming home from the hospital tomorrow.