Got Soy Milk????

Well hello again,

We went to Dr. Patel's office today. We have no port remember so I keep wondering how they are going to check his counts. They did a finger stick. I thought oh boy. The nurse poked his finger and Austin didn't cry at all. He just watched as they put his blood in a little tube. He tried very hard at getting the bandaid off his finger. His counts look really good. His red blood count finally came up. We did find out that the new port placement is on Wednesday and radiation starts Thursday. Wow. All the changes. I had a feeling it would get changed again. We will still be going to Dr. Patel's office once a week. We will just go after radiation. Both places are in the same area so it works out good.

Tomorrow we are taking a road trip to Austin to visit family and have dinner. So Austin will have lots of fun playing with cousins. Sunday we hope to go swimming if it doesn't rain. And if it is not raining on Monday maybe the zoo. It all just depends on the weather.

I need the prayer warriors to start working again. We have a family friend, Max, that is going to have surgery next week. We need him surrounded by angels to watch over his surgery.

We love ya'll,

Elizabeth

My sweet little Austin

Hey Team,

Well Austin has been feeling really good these last few days. We just been hanging around. He is doing very well taking his oral antibiotics for me. He opens his mouth and I squirt it in. He is walking every where now. He loves to go over his Nannie and Pop's house to play with the dogs. His hair is growing fast! Mommy can't wait to have to brush it! He likes to feel his hair. He is probably thinking something is stuck on my head.

Well the plan is still the same. Tomorrow we go to Dr. Patel's. They will hopefully take his dressing off (yeah, so we can take a bath) and check his blood counts(we have no port so I am not sure where they are going to poke). Hopefully it will be a short appointment (unlike Monday's). We will put his new port in on Monday and start radiation on Wednesday.

I am feeling much better now knowing my niece is home from the hospital. Thanks for all the prayers for getting her home!

I will post tomorrow to let you know how the doctor's appointment went and if there are any changes.

Have a great FRIDAY!!!

Elizabeth

Home Sweet Home

Hey Everyone,

I wanted to let everyone know that we are home safe and sound. We were discharged today at 6pm. Austin is doing great. We had a crazy stay but at least it was short. The port was infected so it is out. They gave him antibiotics which of course gave him diarrhea. Yuck! So I have been changing diapers left and right. We were on a different floor this time so it was kind of nice. We started on the oncology floor but when we were admitted our roommates mother freaked out because Austin had a fever and her son had no counts and didn't want him to have a roommate. I can understand the lady's frustration but what was I to do? The oncology floor was full and that is how it works. The roommate was Dr. Patel's patient as well. I am not crazy about having roommates, who is, but you just have to deal with it. Austin had to get and IV placed so he was screaming a lot. Poor baby! It made me very frustrated. He just clung to me and I tried everything to make him stop crying. The roommates mother approached Jason and I with that if Austin had something that we needed to let the doctor know. I kept trying to brush the lady off because it really wasn't her business to know about Austin. I just told her, look Austin has a line infection and she just kept on going how her son has no counts. It was hard to deal with. I broke down and started crying. I had to leave the room. I felt I needed to let someone know what this lady had done to me. I didn't want to complain because in a way I felt bad for her because, yes I have been in her shoes with Austin not having counts and you worry about a roommate having something and giving it to your child. But do you think Dr. Patel would put another child at risk. NO. He put the kids together so he knows what he is doing. I let the nurse manger know what happened only for information, not to complain. She said she would let her supervisor know. Dr. Patel came in and said he need to take care of something and would be right back. He asked those parents to come out of the room to talk with them. He then came back very angry at the hospital because they wanted to move us. I told him it was fine. They moved us to another floor (surgical floor) It worked out fine in the end. We got our own BIG room and it was a quite floor. I am not sure why really DR. Patel was mad at the hospital but he was very upset. Anyways it all turned out fine. So the lady got her way and got her own room and so did we. Dr. Patel said it hurt him very much to see me crying and that bothered him as well. He did let us know a little bit about his conversation with the parents. He explained to them that every mother feels like she does about there child. So her approaching me was not right. The father told Dr. Patel that he wished he would run into us again so he could apologiez.

Austin will be on oral antibiotics for ten days. He goes back to see DR. Patel on Friday and they will take his dressing off. We will go in monday back to the hospital to place another port in. It should be just day surgery. He will then start radiation on Wednesday. So now we get to stay home and rest.

Austin is walking everywhere. The first thing he did when he got home was walk to his room and empty out his bucket of balls. He went to sleep pretty well and I hope he stays asleep through the night.

Well I am very tired now and am going to try and go to sleep. I will post more tomorrow.

I would like to ask everyone to pray for my niece. She ended up in the hospital too. She is doing MUCH better but I would like a prayer chain to start so we can make sure we have extra angels watching over her.

Good night and sleep Tight!!!!

Austin admitted

Austin was admitted to the hospital today after visiting Dr. Patal during his appointment. The access port seems to have an infection and every time they mess with the port, like try to access it, he gets the shakes and a fever. Austin is scheduled to have the port removed tomorrow morning and has started antibiotics for the infection. Since the complications from the infection Austin's radiation will not be until at least 7 days from now.

Splish, Splash I was taken a bath, on a Saturday night....

Hey Gang,

We had a great day. We had Austin's Aunt, Uncle and cousins over for the day. Uncle Jerry and Aunt Amanda helped get Austin's room into shape for him. Austin got to play with his cousin all day long and even got to take a bath with him. He thought that was great when his cousin decided to climb into the bath tub with him. Austin continues to work on his walking skills and is walking very well. Tonight we had pizza for dinner and he was determined to eat the pizza by himself instead of me breaking of pieces. Needless to say he ate two slices. Boy was he a mess. Well I hope everyone is having a great weekend. We sure are having a great time hanging out with family. Austin will get to play with his cousin again tomorrow. Talk to ya'll later.

Yeah!!! I did it!!

Hey Team,

Well we got through the scan!! It went very well. They got a very good scan. They think we will start treatment either Tuesday or Wednesday. I will know for sure on Monday. So far we haven't had a fever tonight (knock on wood)it is low grade. He normally runs 98.4 under the arm. Tonight before bed it was 99 under the arm. He seems to be fine though I said before nothing keeps him down.

It has been a long week so I am glad it is Friday!!! I hope next week is better. I think it is going to be a long three weeks when we are in treatment. I need to think positive though. We go back to Dr. Patel's office Monday at 9:15 am to check his blood counts. We hope to start treatment on Tuesday but Wednesday will be fine too.

Well that is all for now. Hope everyone has a good weekend!!

Ready to try another scan

Hey,

Well today is somewhat better than yesterday. I am still drained from yesterday. Austin went to bed last night at 9:30pm, woke up a couple times during the night, and then again at 5 am to drink his milk. Then he slept in until a little after 9 am. We didn't do much today other than go over to the CTRC clinic to pick up the oral contrast for tomorrow and over to Dr. Patel's office to get accessed and run blood counts. Dr. Patel himself accessed Austin and had trouble. So he put a medicine through his port to clean it out and we sat in the office waiting for it to kick in. It didn't bother Austin he just drifted off to sleep. After about a half hour they checked it and it worked. His counts looked good, his blood level is still a little low. We go back Monday for recheck.

We came home and Austin was acting fussy again. Dr. Patel and I both saw two teeth trying to come in so we know that is part of the problem. Well he spiked a 102 fever. I can't give him a bath since he is accessed and I kept trying to give him milk and he didn't want it. So I called Dr. Patel. He said it probably is him teething and the port issue. Give him tylenol and motrin and again in four hours. Hopefully this will work.

I have to give him more meds right before midnight since he is NPO for procedure and then get him up at 5:15 am to give him oral contrast. We are to get to CTRC at 7:15 am and be in the scan room at 7:30 am. Keep your fingers crossed that everything goes well!

Well I am off to bed. I will update tomorrow.

The terrible, horrible, no good, very bad day

Hey everyone,

Well today was a waste of a day. We started our day at CTRC at 8:45am. We had to give Austin oral contrast in 4 ozs of fluid which he did not want to drink. I had to force it down with a syringe. He cried hysterically. I felt like a bad mommy. He then was fine and played, then took a nap on me. We kept looking at our watches and looking at our watches and no one had come for us to do this scan. We were scheduled for 11 am. Finally the anesthesiologist came to talk to us. She said, " He is accessed right?" I said no, no one has come to access him yet. I had put numbing cream on after he finished the contrast thinking they would be back to do it. It takes about 45 min to kick in. They send someone in to access him. They couldn't get a blood return. So they get some one else. They can't get a blood return. They stuck him 4 times and could not get a blood return!!! The numbing cream wasn't working any more and Austin is screaming!!! The doctor and anesthesiologist had left the room and the nurse said."well we are just going to have to reschedule for tomorrow." I thought to myself, to heck with that. We aren't doing this again. I choose not ro rescan! Austin is very upset by now, so the nurse tells me to give him his milk. The doctor and the anesthesiologist come back in and said they had a new plan. They said," Oh no he can't have milk!" We let them know the nurse said it was okay. They were going to gas him up and put an IV in. But it was too late. I then broke down. I couldn't take it anymore. This was the worse I have ever felt. My child is very upset. They had to poke him 4 times and now we have wasted it all and have to come back to do it again. As these 4 people began to go on and on, I took Austin and left the room. They decided since we had a Dr. appt with Dr. Patel on Friday, that we would go to the clinic get the drink and then go over Dr. Patel's get accessed and they could get his counts and back to the clinic to scan. The doctor said she would call Dr. Patel and coordinate and call me. So we all agreed and we left.

It is now 12:30 and we go to lunch. My mom and I both don't feel good about this port not working. We called Dr. Patel's office and they said to come over. The only had to work on the port a few tries and they had it working. So they went ahead and ran his counts. We also found out that Austin was running a 100.0 temp. Patel said he felt warm to him but would wait to see his counts. His ears looked good. His counts came back. Patel was not really happy with them. One of them concerned him for bacteria infection. So he is on watch right now with his fever. We go back tomorrow for recheck and then they will leave him accessed. I just talked to the Dr. At CTRC and after his appt with Dr. Patel tomorrow I will swing by the clinic to pick up the contrast. I will give him the contrast Friday at 5:30 am and then he will have his scan at 7:30 am. So we will see how everything goes.

That is all for now.

Look everyone Austin is getting HAIR??

Hey Guys,

Yes it is true. Austin's hair is coming in. I already bought him some shampoo so we can start washing it!! HaHa! We don't know what to do with hair since he really never had any when he was diagnosed. So it should be fun to see what he looks like with hair.

Well tomorrow we go to do another CT scan. We have to be there at 8:45 am and he doesn't have a scan until 11am. So this should be fun. They had originally told me that they were going to put a tube down his throat to give him the oral contrast, now they tell me no they are not going to do that (they don't want to have to in other words) he needs to drink it. I told them good luck because all I can get him to drink is milk. They said it is not but an ounce he has to drink so we can mix it with apple juice, so we will try. Let's pray he will drink. I am taking a syringe in case I have to squirt the drink down him like I did after transplant. It might be the best way to go!

Well I better go get everything ready for tomorrow. I will post tomorrow to let everyone know how Austin did.

Father's Day with Austin

Hi Guys,

I hope everyone had a happy Father's Day! We had a great one. Austin visited both sets of grandparents, his great-grandmother, aunt and uncles and his wonderful cousins. He loves to play with his three year old cousin Dylan. They have been to the Zoo together and had a blast.

We heard from the Radiation clinic today. They need to do another CT scan. Nothing is wrong in fact they said comparing the scan from march (two weeks after surgery) it looks really good. It is just that the area where they need to do radiation is fuzzy. They told me they usually have to do oral contrast but you can't get a baby to drink it so they will have to put a tube down his throat. We will have that sometime on Wednesday. We don't know a time yet.

Austin has been working very hard on his walking. Soon he will be running all over the house. We are still working on him sleeping in his crib. His room is right next to the air condition unit and when it kicks on it wakes him up. He won't go back to sleep unless he is on Jason or I. I end up with him on me on the couch. Last night I drug the mattress from the other room into his room and slept in there with him. It wasn't great sleep. He rolled off the mattress onto the floor.


I hope everyone has a great week and I will update you on our visit to CTRC.

Austin's First Steps

Hey Everyone!!!

Austin is starting to walk!!! Can you believe it??? The most he has taken is eight steps, but it is a start! After he walks he claps his hands and we say "Yeah Austin". He has figured out how to get down from the couch and open the back door. He is having fun being a one year old child. We go to the doctor one time a week right now and everything looks good. Friday they did find fluid in his ears so they started him on antibiotics. He did run a low grade fever today so I am sure it was the start of an ear infection, but he keeps on going. Nothing slows him down. I am just starting to learn how to use this blogger. There is a lot to catch everyone up on.

I am still waiting on pictures to be developed from Austins first trips to the Zoo and Sea World. So look at later dates to see those. We are enjoying being free. Austin will start radiation soon. Hopefully next week. He will go Monday thru Friday for three weeks. He will have to be sedated. We already had a practice run and it went well. The drug they used worked really well and he wasn't groggy all day. They did a CT scan and made a mold so that they will lay him the same way every time. He has markings on his belly and two very small tattoos so they know where to line up the machine. I will post pictures of that later. Well all is good in our neck of the woods and we hope all of you are doing well too. I will try and post often and keep everyone updated. Happy Father's Day!!!!!

"The Chosen Mothers"

Hello All,

We are doing all so well. Sorry I haven't posted a entry in a while. Austin's counts are doing great. We are still waiting on information that Dr. Patel is researching to see if we will do radiation. Austin is still in isolation. The plan is to be out of isolation by June 1st. Looks like we are still on that path. It will be weird on June 1st when Austin can be a normal one year old for a while. I want to end with "The Chosen Mothers" by Erma Bombeck. When I went to the doctor for the first time when I found out I was pregnant with Austin they did a sonogram. The doctor had me come back in two weeks to do another sonogram. To find out at the second sonogram that my doctor didn't feel like Austin's was growing from the first sonogram but after looking at the second one she said he is doing fine. When I think back on this now I feel that was when God made a decison to let Austin live but have this disease. For some reason I feel very strong about that. He is my little miracle. After you read what Erma Bombeck wrote you will understand what I mean. I couldn't beleive it when I found this because this is exactly how I felt It happend.

The Chosen Mothers
By Erma Bombeck
Most women become a mother by accident, some by choice, and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in giant ledger.."Armstrong, Beth, Son, patron saint Matthew" "Forrest, Marjorie, daughter, patron saint Cecilia" "Rutledge, Carrie, twins, patron saint Greard." Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious." why this one, God? She is so happy." "Exactly," smiles God," Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel," I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, She will handle it." "I watched her today, "said God." she has that feeling of self independence that is so rare and necessary in a mother. You see, the child I am going to give her has its own world.She has to make it live in her world and that's not going to be easy." "But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect, She has just enough selfishness." The angel gasps, "Selfishness? Is that virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the women I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see.. Ignorance, cruelty, predudice.and allow her to rise above then." "And what about her patron saint" asks the angel, his pen poised in mid air. God smiles and says.."A mirror will suffice."