Christmas with Austin

Austin playing in his pirate ship


Austin cleaning with his new mop


Austin excited about setting up his Pirate Ship








Austin helping put his Pirate Ship together



Austin and his Wiggles mat


Austin in his new goggles

Sorry it has taken me so long to post. We have been trying to get back in the swing of things. For me it is taking awhile to catch up on sleep. For Austin he is catching up on running around and playing. We celebrated Christmas with Nannie, Pop, Alan and Jennifer on Friday night. We will do Christmas with Grandmama, Pa and the the Caperton's next weekend. Friday was I think overwhelming for Austin at first. He didn't know what to think about opening all these gifts. After a while though he got the hang of it and thought it was pretty cool. He got a play pirate ship and a tool bench that he just could not stop playing with. The pirate ship is in his room right now and takes up a lot of room but since he can't go outside he gets to play inside with it. He got LOTS of toys. He got a cleaning set and has been cleaning, cleaning and cleaning. He has been feeling pretty well and is eating okay. He took a long nap today so I don't know what time he will go to bed. Might be un bringing in the new year!! hehe I hope everyone has a wonderful new year and we are wishing for the best for 2007!!!

Elizabeth

Merry Christmas Austin......

Austin fell asleep from the benadryl which is a premed for the platelets

We are going home today!!!! Yeah!!! He has to get platelets, which he is getting right now. That will take three hours and then after that we are out of here. We get to go home and see what Santa left for Austin. He is doing well. I still do not know any info on treatment yet. I don't think we will know anymore until later in to next week. We go back to Patel's on Tuesday and he is not there. Not sure what day we will go after that since we usually go mon, wed, fri. We are guesses tue, wed, fri. We will see.He is starting to get very annoyed at having to stay in bed. I have been letting him stand up in bed and jump. It is great exercise for his legs. All of our movies are getting old. The toys we have here are getting old. This room is getting SOOOOOO old. We will be glad to be home in our own beds. TGIF!!!!! I don't even know his counts right now. I am going to ask a nurse for a copy of them. I am sure they are still low. We will not have any new visitors. It is just too risky right now. We need him healthy so we can stay out of the hospital and continue on with treatment. I hope people understand that. I am not trying to keep everyone from Austin. I just don't want to live in the hospital more then we have to. If Austin got even the smallest cold right now it could be life threatening. Please when everyone feels ill stay away. Even if your not sure just be safe and stay away, that is the best thing to do. Jaosn and I can not afford to get sick either. Thanks for understanding. I will update more when we get home.

Elizabeth

Still waiting....

Yes we are still here in the hospital. His ANC is still ZERO but all the cultures are negative. He is feeling much better. He is just about back to himself. He actually gave the nurse a hug last night. They still have him on pain meds every four hours. But when he is sound asleep they don't give it to him. So he had it late last night and nothing else through the night and did fine. I don't really think he needs it anymore. I was hoping to go home tomorrow but doesn't look like it. We still have no word on treatment. I have a bunch of questions for Patel but unfortunately it was Patsy who was doing rounds this morning. Which stinks because I worked all day looking into treatment and stayed up late to get stuff prepared to talk to him but then we don't get to see him. So I talked to Patsy about a few things and she is going to talk to him. This waiting game is killing me. Maybe Patel will come by later. If not we will talk to him tomorrow. I will update later if I find anything out.

Elizabeth

Long Haul......

Sorry I didn't post yesterday but I am still trying to figure everything out. Yesterday we were told after lunch by Patel that he wanted to do a CT scan while we were here to see where we are. The next thing I knew they were in to put an IV in his hand for the contrast for the CT scan. Then they were here to take us. I had to say hang on now, he won't sit still for this CT scan and last time the benadryl didn't' work and we had to go to an anti anxiety drug. So they had to call Patel and get it ordered. It works pretty fast so he was in his happy place. During the CT scan they told me that the contrast upsets the kids stomachs. I guess we don't remember this because usually he is sedated. So yes he did spit up some or shall I say quit a bit. It was mostly mucus and sour milk (yuck). When we got back to the room they took out his IV and he played with his toys but was really out of it from the medicine. When one of his antibiotics was finished they flushed the line and it made Austin throw up some more. So we got him some Zofran and cleaned him all up. needless to say I didn't sleep much. I worried all night long and I had a knot in the pit of my stomach telling me that there just isn't going to be what we want to hear. I talked to Austin's nurse last night and just broke down crying. I told her sorry I just have a lot on my plate and watching him not feel good just makes my heart ache. We had a long talk and she reminded me of how this is a rollercoaster ride. The ups and downs. We have seen some downs (little dips) but right now he is stuck in a big dip. Like the rollercoaster car needs some TLC to make it back up to the next hump. We have been so lucky in the past to only have a few short dips but now we are hitting some major downs. We will eventually get back up it will just take time.

Patel came in a 8 am. I could already tell when he walked in the room they we didn't get the answer we wanted. He said the tumor behind the eye is okay. The one in the chest has shrunk 12%. There are no new lesions. No infection or fluid in the lungs. But it just isn't where we hoped it could be. He doesn't think we will get the response we need to have the transplant. He is going to have the surgeons look at the scans to see if surgery could be an option. He said as of right now the only option is still chemo. He talked about changing up the chemo and doing three more rounds.He said we also need to sit down and talk about everything. That right there in itself scares me. We have not really had to do that. His red cells took a major drop from 10 to 8.8 and he didn't think that was right so he was having them redraw blood for counts. His platelets hit rock bottom with 12. So he is getting platelets here in a few minutes. Haven't gotten back the results on the red cell count but platelets came back the same. They have now put Austin on pain meds every four hours to help him heal. With his counts down low and the sores in his mouth can't heal by themselves. So to keep him comfortable and to keep ahead of the pain, scheduled pain meds is the way to go. We also found out that the medicine they give him to increase his white cell count can cause bone pain because of the bone marrow trying to make new cells. So this could be some of his irritableness.

We ask that we have no new visitors right now. With his counts so low and some many things going around out there it is safer to keep people away from him. He feels so crummy right now that he really doesn't want people around him. He is comfortable now sleeping with his blankie and his new teddy bear.

We are hoping Patel can find us some options other then just chemo. Please pray that there is an option out there for Austin. I myself is trying to research on what to do next. One of my questions to Patel in our talk will be "is this the place we need to be?"

Elizabeth

ANC Still ZERO

No going home yet. Austin's bone marrow still hasn't recovered from treatment. All cultures are still coming back negative. His mouth has a few sores which we think could be herpes. Patsy said when your counts are so low that herpes tends to pop out. So Austin has had to be on pain meds. It worked so we know he is having some pain. He is also still very aggressive when they do his vitals. Patsy feels it is terrible twos. She said she would rather see him that way then not. Knowing he is on track with his development. He is still asleep right now. I don't want to wake him since it is so quite in here. We were up and down because now Austin wakes up and screams every time they come in to do anything. But he goes back to sleep right away. So that too tells me it is terrible twos. His red cells have dropped to 10 and platelets are 30. He will get a platelet transfusion tomorrow and possibly a red cell too.

Sorry for not blogging yesterday. It was a very hard day. One it didn't even feel like Christmas and two Austin was in such pain from his mouth. He took a four hour nap but still when he woke up was very upset and in pain. So we finally got to give him pain meds. It made him feel back to his normal self. He ate and talked and played. I thought it was going to make him go back to sleep but it didn't.

Since it was Christmas yesterday, no restaurants were open early so for lunch I got hospital food from the cafeteria. HMMMM to find out it was left overs and it was horrible. Austin was served a plate of broccoli. What in the world is going on down there????? Thank goodness for McDonald's opening up for our dinner. I am not too crazy about McDonald's but it sure did taste good last night. Austin ate pretty well himself with the pain meds taking the pain away from his mouth. I guess today I will have them give it to him so he can eat better. I will update at the end of the day to tell you how he did.

Elizabeth

Christmas Eve at Methodist Hospital....

Austin calling Santa


Austin and Mommy watching Wiggles

Nothing special going on here. We are just sitting here watching Wiggle videos to keep Austin entertained. He has been on steroids starting in the middle of the night so he is very AGGRESSIVE. Not the Austin that we know. I haven't updated sooner because my hands have been full with him. He doesn't want to sit still, screaming and squirming at the nurses, throwing toys and hitting. Oh so fun. The nurse and I had talked earlier about giving him some benadryl to calm him down and to get some rest. So we gave him a little while. Then it was nap time and all of a sudden he was getting more irritable. So the nurse walked in and I asked "do you think we could go ahead and give him benadryl?" The nurse pulled a syringe out of his pocket. He had read my mind. So Austin and I took a LONG nap. Now he is up watching Videos and playing with toys. My family is having the traditional Christmas Eve dinner and Jason then will bring me a plate up to the hospital for me and maybe Austin will eat some. They brought his tray tonight and it was a sandwich and cookies. He only at some of the cookies, go figure.

Patel and Patsy were both up at the hospital this afternoon. Patel came in and said he was sorry that we ended up I think it is he usual fever that he gets when his counts are so low. The teething on top of it didn't help. Well I better go Austin wants me to play trains with him. I will update later.
Elizabeth

We are checked in

Austin in his Christmas Eve outfit

We got to the hospital around 5:45 and now it is 8:45 and we are all settled in. They had a lot things they had to do with Austin which just made him supper mad, so now he is fast asleep. He is miserable. They gave him tylenol at 6:10 and he still has a fever. He just doesn't want to be messed with. Another down fall to our stay is where are in the transplant wing. Which they have a whole set of "rules". So now I can't eat my meals in here and only two visitors (including me) are aloud in the room at one time. You have to wash your hands before you come in the room (I don't mind that one at all. I think it should be that way for every floor) and last, they have a monitor that they use to do his vitals instead of bringing in a portable vital machine. The thing that sucks about this is it is on the side I have to sleep and so they have to violate me in the middle of the night to get to him. Oh this shall be fun. I can't sleep on the other side of him because the pump is on the other side and they need to be able to get to his lines too. I have to sleep in the bed with him to make sure he doesn't fall out. So we will see how this night goes. I think I am planning on going to bed early. Mentally I am so very tired. I am ready for this stay to be over!! I put a picture of Austin in the outfit he would of worn on Christmas Eve. I didn't want to take a picture of him tonight because he is so cranky and everything is making him mad.
Elizabeth

Christmas on hold for Austin...

Well it happened. His temp went to 100.9 today. Unfortunately he has to be admitted to the hospital. So we will be there Christmas. He is drooling bad. His mouth is bothering him a lot. His fever just couldn't stay down. He is very fussy so and doesn't feel good so I know this is what is best for him. But I just hate to be there for Christmas. Oh this stinks. Well the weather stinks so they told us to take our time getting there. So I am going to make sure I have everything packed to go. I will post later any news. Hope everyone has a very Merry Christmas. Happy Birthday Amanda!!!!

Elizabeth

We wait and pray....

Austin is keeping us on our toes. Yesterday he started to run a 99 to 100 temp. The magic number to call is 100.5 under the arm. So it never got to that. We made it through the night even though I was packed and ready to go if we had to. It was a long night though. He tossed and turned and woke up a lot crying. We went to Patel's office at 8:45 this morning and his temp was 99.2. Patel feels to that it could be his teeth. He is having a hard time eating things, cranky, playing with his teeth with his tongue. So he didn't throw us in the hospital like I thought. Yet. He says if gets over a 100 then more then likely there is something going on. So we wait. We pray and see what God has in store for us. Austin did get platelets today to hold him over these three days. His platelets were at 94 but by Tuesday they would have dropped a bunch. So with platelets comes benadryl and tylenol. Thank goodness. Hopefully the fever will not come back. We hope and pray. So far he feels much better since he got tylenol and a good nap. He ate a pretty good lunch. So we are just waiting to see if the fever comes back. I am going to try and get something for him to chew on because I can't give him anything for the pain. So we will see. Hopefully we can get through the weekend and be home for Christmas!!!

Elizabeth

Good old Platelets

Austin's platelets were at 30 today so they went ahead and gave him a transfusion. It was nice to go see and talk to Delores. The time actually flew by. She reassures us that if we have to be in the hospital on Christmas that she will be working the floor. That makes me feel good. So if we have to be there at least are favorite nurse will be around. We are still praying it doesn't happen. But I just wait. I feel any day now a fever can pop in. I am forever checking his forehead to see if it is warm. His white count is still zero. ANC doesn't even register. Today Austin wore his santa suit to the office. He got some many looks from people as we walked up to the office. The staff went crazy over him. They were all upset they didn't have a "working" camera. They all tried taking pictures of him with their camera phones. So they all asked if I had a picture of him in his santa suit to give them. I said of course. So the one posted is the one I will have to print up for them. I will do a bunch because they will all want one. Austin has been feeling pretty well these days. He is quietly playing right now. But that won't last long. He has been learning to work the VCR and nearly has broken it. I think I am going to have to move it. We talk about Santa coming and he gets real excited. We also talk about what Santa might bring. When I tell him "maybe Bob the Builder and Wiggles" he starts to sing. Well the quietness only lasted five minutes. Now he is banging his cars on the floor and saying "Good God". Silly boy. We go back Friday for blood counts and hope his counts are up and no fever.

Elizabeth

"Good God"......

Yeah that is what Austin would say to his counts today. They hit rock bottom again. My son seemed to pick up from me the "good god" saying. At least it isn't a bad word. It started with the phone ringing. We get so many telamarketing calls and I would look at the caller Id and say "good god". So now when the phone rings you hear Austin say "good god". Too funny. About Austin's counts, the are once again so low they are not registering. "Zero" is what Patel said today. So the chances of a fever happening are high, so prayers are needed. We don't want to be in the hospital for Christmas, I don't think anybody does. We thought this Christmas would be so fun, since he understands more. If we end up in the hospital for Christmas, we will just have Christmas when we come home. At least Austin is still young enough to not know the actual day. So when I got the news that there was a chance of going to the hospital this week. I finished the Christmas shopping. I worked on getting it wrapped but forgot to buy more wrapping paper. Darn. So tonight after dinner I will get wrapping paper and finish wrapping. I am not going to put them out under the tree yet, not sure if Mr. Austin will get in to them. His friend A.J. seems to be unwrapping presents and making his mommy rewrap them. I am sure Austin would do the same. So I will have everything wrapped and put in big garbage bags. Hehe.

Even though Austin's counts are down doesn't keep Austin down. He has been running around all day, with a little nap, hoping he will go to bed early tonight. Seems to be eating and drinking well to. We stated back on his shots today and I am sure that will go on for awhile.

Well I decided to share with you Austin's Christmas picture. A couple of weekends ago Austin had a surprise visitor come to visit him. His own personal Santa!!! Last year I didn't attempt take him to sit on Santa's lap due to germs. Just didn't think it would be a good idea. This year we were lucky enough to have Santa come to visit Austin. Well Austin didn't care for Santa at first. He had to change out of his Santa suit and make friends. Then he watched Santa get dressed and was okay with this. Can you guess who Santa is???? I will give you a hint, he was also the clown at Austin's party!!!! LOL Shhhh.....Don't tell the kids!!! Our little secret!!!! So yes mommy got her wish, a picture of Austin on Santa's lap. I have to say it came out well. I even got one with the dogs!!! I think next year we will rent him out!!!! hmmmm a personal Santa that comes to your house!!! I think that is a great business!!!!! Hope you enjoy these pictures as much as I do. Like Angela says (Christi Thomas' mom) "these pictures I will always cherish".

Austin and his personal Santa

Austin's dogs Gizmo and Abby with Santa

The end to a long week...

The end of this week is here. Yeah. It was a wet one coming home. And I don't mean rain. Austin had a blood transfusion this afternoon and they have to give him a drug to make him pee. He usually only gets it before his transfusions but today since Patel was giving him a large unit he gave it to him afterwards. So on the way home we hit traffic and by the time we got home Austin was drenched in pee, car seat and all. Poor thing. But he is so happy to be home. He is kissing all of his toys. Tummy seems to be feeling good. He asked for a snack when we got home and ate it pretty well. His counts didn't look to bad today. Of course his red cell count was dropping but we knew that was going to happen. His ANC was at 1,300. Before we started chemo it was 800. Not too bad Austin. His platelets were 200 today!! Yeah platelets! Today he did well but didn't want to sit still. Can you blame him? For four straight days he has had to sit for hours. Lately after chemo he has been walking to the car. He loves to do this. We were at Patel's today at 8:45 this morning for chemo and were hoping to get in and out to get this blood transfusion so we could get on the road to home. But yes there was delay. We got through chemo around 11:30 and they told us the clinic was full, to down there in an hour. So we had an hour to kill. We went through the drive thru of Austin's favorite place to eat, Chick-fil-a and ate our lunch in the parking lot. We headed back to the clinic. The orders said to run the blood over four hours but they say that is impossible because the blood expires at four hours from the time it leaves the blood bank. So they ran it over for three hours. We learn new things each day. The nurses in the clinic could not get over that Austin needed a blood transfusion. He wasn't tired at all. He was full of energy, hopping around with the PCA. While waiting for the blood to come up, he ran around the room. Thank goodness no one else was in there. He would of driven them crazy. He was yelling and running all over the place. He fought the benadryl, but the benadryl one in the end. He now knows he is going to fall asleep so he doesn't ever want to sit still. So he is happy to be home with out being accessed and now can get a BATH!!!!! Prayers......for no fever and no admittance to the hospital...Pray that this chemo did the job!!! Bye Bye Neuroblastoma!!!!

Elizabeth

My guess was right....

Well I guess right. Chemo and platelets today. Tomorrow the finish of chemo and blood. Platelets were at 34 and red blood cells were at 8.8. White cell count is still low but hanging in there. He hasn't eaten much today but has had a high energy level. We are getting pizza for him tonight to see if that interest him in eating. Poor thing is ready for a bath. One more day sweetie!!! He is singing and watching Bob the Builder. No, he is not watching the Wiggles, taking a break. He watched some of Barney too. He is wearing his favorite shirt today. It is Bob the Builder and Scoop. His cousin Dylan gave it to him. One day I was looking in the size 2T bag of clothes cousin Dylan has out grown and Austin found that shirt. I was looking for PJs but Austin fell in love with the shirt and loves to wear it. It gets very excited about wearing it. Today the nurse mentioned about his shirt and he tried to hug his shirt, so he basically hugged himself. LOL It is big on him but he doesn't care. LOL Well start the prayers on no fever and no admittance so we can stay home for Christmas. Hopefully his body can handle his counts being down and hang in there until they come back up.

FU_NB06

Well if you keep up to date on Christi's blog you will already know this but if you don't I am happy to inform that The Thomas Team found out yesterday that they were able to get the cell line they needed from Christi to help find a cure for this nasty disease Neuroblastoma!!There was only a 20 % chance of getting it and they go it!!! Way to go Thomas Team for being so strong in making this decision. Christi was a fighter and will remain in all of our hearts as we watch Austin fight this nasty beast. Thank you Thomas Team for making this possible. We love you all.

Elizabeth

Platelets falling....

Austin handled chemo like a champ again today. He is still feeling well and still eating and drinking pretty well. His energy level is still pretty high. He has been sleeping well too. Thanks to good old benadryl. I get to give his zofran and benadryl through his port again. So I sleep three hours get up change his diaper or give him meds. I caught up on my sleep with him during his later afternoon nap we took. It was nice. Now he is digging in his toys.

Platelets are taking a toll so my guess is platelet transfusion tomorrow and red cells on Friday. So the next two days shall be long ones. We are hoping for Christmas Austin stays out of the hospital so please pray this can happen.

Thanks for all the prayers and support. It helps us get through this rough time. The holidays always make it hard. I was hoping for a "normal" Christmas with Austin this year. Hope for next year.

Elizabeth

Counts are dropping...

Austin's chemo went well. His counts are starting to drop all ready. Patsy says it is because the chemo is so strong. He seems to be feeling well. He has backed of eating a lot but is still eating some. He is still drinking a lot which is good for pushing out the chemo out of his body. This time around we got benadryl an zofran that I can push through his port instead of giving it to him orally. That will come in handy at night when he sound asleep and is time for his Zofran. Last night it was due at 1 am and I skipped it because he was sound asleep and I already woke him and hour before it was due to change his diaper. I was up and down most of the night changing his diaper. But it is better getting up on my own rather then in the hospital. Austin is eating chicken watching Curious George. Yeah he is back to eating chicken again. Last time he didn't want chicken. I guess it taste good this time. We have the same routine tomorrow.

Elizabeth

"All I want for Christmas........."

To: santaclaus@thenorthpole.com

Cc: elizabeth_akin@hotmail.com

Subject: All I want for Christmas


Dear Santa,

I finally got my mommy to let me use her computer to email you. I told her I knew what I was doing. I am not sure who you are but I keep hearing my family talk about you coming to my house and how I should be a good boy. Is this true? When I watch my videos I hear them say the kids write a letter to you to tell you what they want for Christmas. I see mommy always typing to people on her computer so I thought this would be the easiest way to get a hold of you since I hear you are very busy this time of year. I am trying to figure out what I would like for Christmas. I have lots of toys that I love to play with already. I have two dogs that I love so much. I have a wonderful family and friends that always come to visit me. But I do hear that I have this thing called cancer. I hear Mommy and Daddy talk about it all the time. I think this is why I can't go outside and play. My mommy is always spraying stuff to clean it. Oh and do you think you can get my mommy a maid for Christmas? She is always cleaning, cleaning and cleaning. My mommy and daddy keep telling me I will be okay and that they love me very much. I have to go to this place three times a week where they poke a needle in my chest, oh it doesn't hurt, mommy puts special cream on it to make it not hurt. They take this red stuff out of my chest and come back with a pink paper for my mommy. Some times my mommy has a smile on her face and sometimes she has a sad face. When she has a sad face I have to get poked in my leg. Ouch, now that hurts. Sometimes I have to go to this big place and stay there at night time too. My mommy stays with me so I don't get scared. But we don't get to Sleep much there. They always wake us up at weird times. I told them don't wake me up unless the Wiggles are on. But they don't listen. But the best part is when I get to come home I get to play with all the toys I missed while I was gone. Sometimes though I don't feel very well. Shhh don't tell mommy though. I always put a smile on my face so she knows that yes, it will be okay. Sometimes the medicine they give me makes my tummy really upset to where I throw up on my mommy. I don't mean too. I just can't help it. But then I get to get a bath and that makes me happy. Well I still haven't figured out what I want for Christmas but I am still thinking. I did want to see if you could talk to this guy my mommy and I always talk to, his name is God. Can you see if you two can work together and answer my mommy and my prayers? Mommy says we need to pray that God works in my doctor's hands so he can heal me and make the cancer go away. So if you think you can do this that is all I want for Christmas. I know my Mommy and Daddy will be so happy. But if you can't will you just pray for me to get better? All I want for Christmas is good health and happiness for all the kids with cancer.

I love you,
Austin

One down four more to go!!!

Austin sailed through chemo today. Austin to have fluids run tonight while he is sleeping. That way tomorrow won't be so long. Austin eat his lunch today (four chicken nuggets)and watch lots of Wiggles. He took an early nap today so hopefully he will go to bed early tonight. Today he decided to walk back to the car after treatment. He walked out of the office and all the way down to the parking garage. I guess all that sitting made him want to go on a walk. He did so well going down all the steps and all. We are home and he is going ninety to nothing. Playing with all of his toys and chasing the dogs. At one time Patel came in the room to check on Austin and he peeked and said "is he okay?" I said yeah, he is just quite because he is eating chicken nuggets. Patel started laughing and said that's my boy! Tomorrow we don't have to be there until 9:15. This morning was kind of hard getting ready and getting all the meds in Austin. He has all of his allergy meds plus the temodar. We will manage to get it all in order. Hopefully this week will go by fast. Today went by pretty fast. I will update tomorrow.

Elizabeth

Treatment moving on......

Well Austin had a good appointment. Counts are up and treatment is moving on. He said we would start chemo monday no matter what monday. He stopped his shots for the weekend. He will take his temodar starting monday morning before chemo instead of after chemo. Patel said the next three weeks are going to be VERY busy. So Monday here we go!!!! I have to get all the christmas shopping done this weekend and get the house cleaned. I need to get the prescribtion to the pharmacy so they can oder it so we can have it by monday. His white count is up, it jumped (because he is on the shot) and platelets are up and red cells are holding still. Scans are not needed he said. He said the best scan is his eye (Patel's that is), and he says everything is where it needs to be and we need to move foward. Patsy says his eye looks better then Monday. Everything else looks great. So yes still under isolation. I can't afford for him to get sick before treatment. I hope everyone has a nice, warm weekend. Hope all is feeling well and if you don't take some time out for yourself to get better!!!

Elizabeth

Well Austin's poor platelets were down to 18. Way too low. His skin was starting to show how low his platelets were. So Austin got his shot at Patel's office and headed over to get platelets. Now we are home and he is playing with toys. Daddy was home from work today so Austin thought that was a treat to have him tag along with us. We go back Friday for counts and to see when he will have scans and when he will for sure start chemo.

Elizabeth

Round four here we come.....

Austin's counts are starting to come up. His white count is still low. But Patel says he can see that it will increase but it is still VERY low. Low average white count should be 4.1 and his is 0.8. So yes VERY low. And.....we need them to increase for next week. Patel wants to start another round of chemo. Cytoxin, topotecan and the Temodar drug again. Just like last time. Round four here we come. Right now his platelets are low 56. So wed or fri he probably will need a platelet transfusion. Usually they infuse when the get to 20 and under. His red cells are at 12 which is okay. They infuse when the get to 8 or lower. So steady right now. He has had a really bad runny nose, so Patel wants him back on all of his allergy meds so he doesn't end up with a sinus infection. We can't afford any kind of infection right now. Today he had a fun car ride. I decide to get going on Christmas shopping since next week we will be doing chemo and who knows where will be the next few weeks after that. Nannie would stay in the car with Austin while I would run into the stores. Part of the time Austin took a nap. We also need to get out Christmas decor up. Austin's energy level still has been high. He has been eating and drinking wonderfully. His nodes in his throat were a little swollen so Patsy was worried something is going on or he was coming down with something. Hopefully the allergy meds will help with that. His ears look great. She said there is ANY fluid in them. I think today his eye has looked the best it has looked in a while. Some days it looks different. So weird. Today when he was at Patel's office one of the staff and Austin's friends came in the room to play with him. While she was in there the came in with his shots. She witnessed how wonderful Austin takes his shots and says " I wish I was half as brave as Austin is". Isn't it so true. Man he is such a brave little boy. For all the stuff he has to go through and all he worries about is making sure his Wiggles are on TV.

This weekend we basically stayed in our PJs (what's new, we are in them all the time at the hospital. HaHa) He took good naps but he isn't much for going to bed early. Who can blame him though. His schedule always gets thrown off. Hard to keep any kind of schedule.

Patel said today, "Yes dear, we will be doing the Temodar again and you can wear gloves this time." and laughed. I don't know if I told everyone about what happened. But I we got Austin's Temodar at the pharmacy and the description never really explained really what it was. It is in capsule so I have to open it up (even though it says not to) and put it in apple sauce. Well I did this for three days. To find out when we got to the hospital and I have to give it to them there, it is a chemo agent and you are suppose to put gloves on and use disposable spoon bowl. Oh boy. I had not done this at all. In fact I prepared it in the kitchen and they said not to do that either. I made Jason come home and throw all of his spoons and bowls that were in the dishwasher away and wipe down all the counters and highchair. I kept going on and on to the nurse that you would thing the pharmacist would tell you these things and she kept saying, you mean no one told you? I said nope. So I guess someone told Patel because I sure didn't. Haha. He laughed and said he has handled this drug many times without gloves and he is okay. Then he said well, I have lost some hair. Haha. He then told be he thought I would look fine with out hair. Man he sure can make you laugh when you need to. He always says it is okay to be angry but you must then pick yourself up and move on. You can not be angry forever. I myself try to put humor in my life. You know the saying " Live, Laugh, Love". Before Austin relapsed we were having trouble controlling his runny nose. That is when we started on all the allergy meds. Then after chemo in September, Patel asked me how his runny nose was. Surprisingly it was gone. I told Patel the chemo must of cured it. Patel laughed and smiled at me. I told him, you have to have some humor in all of this. He said so very true.

Well Austin has found some of his Christmas presents in the closet and he wants to play with them now!!! I keep trying to keep him out of my closet but he keeps going back. Silly boy.

Well I better go. We go back to Patel's office wed and he did mention doing scans when his counts go up. Maybe it will be during chemo.

Elizabeth

Say Good Bye to room 32!!!

Yes we are going home today. Yeah!!! Austin is getting platelets as I write. So we should be out of here in about an hour and a half. We have to stop by Patel's office to get his shots for the weekend. His white count is still down so we can not have any new visitors. Sorry. We need to wait until his counts come back up. We need to be very careful because we could end right back here since his white count is so low. So we will lay VERY low until we see his counts are up. I am scared but if we end up back here then we end up back here. We will look at it as a break. LOL This room is the pits. I have been hearing noises all day and all night above us. We are on the top floor of the Children's Hospital so I couldn't figure out what it was. I have asked and asked many nurses of what this noise is. I never heard it in any of the other rooms. So finally a PCA that works the night shift has heard it from the past two nights and wonders the same thing. It sounds like some one rolling a big chart across the floor. She is new here so she said she was going to ask. Well last night she was sitting at the nurses station and she heard the same noise there so she turned and was looking for the noise. Low and behold it was their tube system. LOL You know like they have at the banks. I laughed so hard. I thought they had large rats!!! So know every time I hear it I say there goes a tube!!! This morning they took Austin's blood for labs and a few minutes I heard the tube go. I said there goes you blood to the lab Austin.

Austin was not a happy camper this morning because the woke him up at 5:30 this morning for an xray. Austin put his hands up and looked at me like "why?" I told him he needed to talk to Patel. He was up so I put the Disney Channel on. He saw a preview for the Wiggles so he got excited. The problem is they don't come on until 6 am. So he cried. He got over it though. Six o'clock came and he watched the Wiggles and then went back to sleep.

Yesterday was a big deal for us. We found out Greg the "Yellow Wiggle" was leaving the group for medical reasons. So the understudy "Sam" is taking over. We are wondering how they are going to do this. I think they are going to need to give Sam a new color shirt and call him Sam. Nannie said his color should be green. We will see what they do.

Well I better go and help Nannie pack all our stuff up. We will update later.

Elizabeth