Austin Akin's Cancer Battle

Eat At Chili's Monday September 29th!!!

2008-09-28T18:46:00.002-05:00

It's that time of year!!! Check out the Flyer.... click on flyer to make it bigger...

Discovery in NB!!!!

2008-08-30T21:14:00.006-05:00

Hello all,

Sorry it has been so long since my last post. It just doesn't feel right writing about Andrew on Austin's blog. I will update about Andrew though, so don't worry but first about the discovery in NB. I nearly fell on the floor when I read the title but Scientists have discovered gene mutations that are the main cause of the inherited (familial) version of the childhood cancer neuroblastoma. In addition, the researchers found that the same mutations play a significant role in high-risk forms of non-inherited neuroblastoma, the more common form of the disease. Clinical trials are planned to target the gene product in children with neuroblastoma. Here is the link if you would like to read the article. http://www.newswise.com/articles/view/543628/

Now about Andrew. He is doing well. Getting so big. Right before his two month check up I noticed that his right side of his head was kind of flat. I was so mad at myself. I would rotate his head but he would always go back to the right side to lay. I even woke up in the middle of the night to move him but he would always go back. It is so different this time around because with Austin he was on his side so I would just rotate sides. Now they have them sleeping on their backs so it is very important that you rotate their heads. We went to the doctor for his two month check up and I voiced my concerned about his head. The doctor said "yeah I see that and am about to jump all over your case". I told him that I rotate his head but he keeps favoring his right side. He worked with a little and discovered that he has Torticolis. He favors the right because the left side neck muscles are tight. His case is mild but man do I wish it was diagnosed sooner. But this diagnosed is way better then getting diagnosed with cancer any day. Treatment is going to physical therapy. We have gone twice and they have given me exercise to do at home and that is pretty much it. He is doing oh so much better!!! Now he holds his head up and turns to left all the time!!! LOL He is already wanting to sit up. Doesn't want to lay down and be a baby. That is just like how his brother was.

There are days when I go in to pick him up out of his crib and boy I have flash backs of Austin. It kind of scares me. We talk about Austin all the time. We call him "bubba". We look at pictures of him all of the time. We watch videos of him all the time. Andrew just smiles at him like he knows him. That's the way I want it. On the way to church on Sundays we pass by the cemetery and we shout out "We love you and miss you Bubba!!".

I am now back at work and Andrew is staying with my mom. They are finally getting on a schedule and enjoying being with each other. It is hard not being with him each day but I know he is great care of someone that loves him so dear. In the morning we are up so early that we get to watch the Wiggles. This of course as you all know was Austin's favorite show. So we watch it in memory of him. Andrew loves it. He almost acts like he already knew about them. I swear he even started cooing like he was singing with them like Austin use to do.

We go back to the doctor in September for his four month check. Boy do I have many questions for the doctor. Especially with this new discovery with NB. I am thinking we will want to check Andrew out to be safe. There isn't a day that goes by that I don't feel on Andrew looking for lumps but I knew I would do that. I think he is getting use to it.

We want to thank everyone for keeping us in your prayers over the years. We are so thankful for the blessings in our lives. We miss Austin everyday but know that he is here in spirit. When I look at Andrew I see a little of Austin smiling at me saying "I love you Mommy". He has given us such a wonderful gift, his little brother Andrew.

Andrew is home...

2008-05-25T15:01:00.003-05:00

Sorry guys for not posting earlier. I have had my hands full. But yes Andrew is home. He only had to stay the one night in the NICU and they kicked him out. YEAH!!! We got home Thursday about 11 pm. We got out so late because he had to stay until 9 pm, waiting on the 48 hour culture to come back negative. See I tested positive for the Group B Strep and the antibiotics they gave me didn't fully get in me in by the time he was born. So they were concerned that it would be passed to him. They also thought that might of been why he had some breathing problems. It turned out it was because he was early.

He had to go back to the hospital on Friday for his hearing test. He passed. He also had his first Doctor's appointment on Friday. He did very well with his shot and was maintaining his weight very well. He is a little jaundice but the doctor thinks he will be fine. We go back to the doctor for follow up on Tuesday.

It is so different having a baby in the house again. We are still trying to adjust. Especially the night time. I hope to take Andrew to the cemetery soon to visit his brother Austin. But it is so hot. I talk to Andrew about Austin all the time. We will post some pictures soon so you can see Andrew grow.

Hope ya'll have a great weekend.
Elizabeth

Andrew Foster Akin

2008-05-21T05:36:00.002-05:00

Hello all,

Wow... Andrew decided to come 4 weeks early yesterday.. He weighs in at 6 pounds 14 ounces and 18 inches long.. He is having trouble filling up his lungs and is breathing fast so they have put him in the NICU... We are so excited that he is here but then again so worried.. We know that his big brother Austin will be watching over him as I know he was watching over me during delivery. I had a very nice delivery with hardly any pain... Thank you Austin!!!! We will keep you updated on Andrew's condition...

Love,

Elizabeth

Mommy to Angel Austin and Andrew

Austin's 1st Angelversary....

2008-04-06T15:55:00.000-05:00

The day has come. He has officially been gone a year. It's been a quiet day for me. I have just been thinking about him and all of the good memories we have of his short but wonderful two years of his life. There is not much for me to say other then he is missed dearly and will forever be carried in our hearts.

Gizmo, one of Austin's dogs, made me laugh today. I had just picked up the living room and he started bringing out all of his toys. Just like Austin would do. When I laughed at him he just turned and sat and looked at me like he knew what he was doing. In some strange way I think he knows what today is. He seems to be sad just like the rest of us.

One of our friends ran a marathon today in memory of Austin so we will post the pictures from that on here and on his website later on.

I will end with a quote from Abraham Lincoln that makes me think of Austin's life.

"Live a good life.. and in the end, it's not the years in a life, it's the life in the years."

HAPPY 3RD BIRTHDAY AUSTIN!!!

2008-04-02T20:27:00.008-05:00

Wow... A year has gone by so fast...Our little man would be 3 today!!! Jason and I knew this would be a long week with Austin's birthday and then of course him passing 4 days later. Working has kept me busy and we had a wonderful Chick-fil-a (Austin's favorite) lunch with an ice cream sundae party at work in memory of him. I am surrounded by wonderful people at work that know when to lift my spirits.. I am thankful and very lucky to have them in my life.. After work we went to the cemetery to place flowers from Austin's great grandmother and some balloons... I have just realized that this is the first time I have posted pictures of our headstone..

Austin-

Mommy and Daddy think and talk about you all the time and miss you so much... We know we will reunite with you someday in heaven but know that we need to be here on earth to take care of your little brother, Andrew... There are so many days that go by and I am so lost without you.. You were everything to me and now I feel empty... I know you are giving us a wonderful blessing that is growing in Mommy's belly... I sat in your room last night and just wondered if you were there because it sure did feel like it.... I am learning more and more each day of why you were sent to us and why God wanted us to be your parents... thank you for always loving us with your sweet smiles and big hugs that are missed ever so much.... We love you....

Mommy and Daddy

Baby update...

2008-03-06T18:30:00.004-06:00

Hello all,

Things have been going well here in the Akin casa. Baby Andrew is growing and so is Mommy. I had a doctor's appointment today. It is strange how they fall on or near the 6th of the month. Everything looks good. It is hard to believe that he will be here in three months and Austin has been gone for eleven months. I can't get over how time flies but it sure does.

We think and talk about Austin everyday. I even put one of Austin's videos on the headphones and put the headphones up to my belly for Andrew to hear. He moved around alot when listening to Austin.

I had a dream that Austin was hear while I am pregnant and hugging my belly and kissing it. I know he would be so excited.

Hope everyone is doing well and staying healthy. We are praying for good health for Baby Andrew.

If you get a chance and haven't checked out Austin's website lately, take a look at it. Uncle Alan has changed the look and it is a wonderful memorial site for Austin. He would be so proud.

Elizabeth

Nine Months.....

2008-01-06T19:54:00.001-06:00

Today marks nine months since our little boy went to heaven... It is hard to believe that he has been gone that long... It seems just like yesterday he was running around the house...

This holiday season was hard but going up to the hospital helped out a lot... I have had my ups and downs.. Trying to stay positive and happy about our new bundle of joy that is due in June!!! Yes as Austin tells you in the picture, we're having another little boy. We are very excited and know Austin is proud!!!!

We miss you Austin... We think of you everyday and know you watching over us from heaven!!!

Austin's Gift Christmas Luncheon

2007-12-20T20:12:00.000-06:00

Hello all,

I am in the mist of working on a luncheon for the kids and families at the hospital for Christmas day. After Austin and I spent Christmas in the hospital last year, I decided never again will I let someone go through what we had to on Christmas Day. The food from the cafeteria was horrible and nothing was open to get anything from anywhere else, and you know Austin, very picky at what he ate. This year I will be taken lunch to the hospital for the all of the families and staff that are stuck at the hospital for Christmas day. We will have Santa there for them to visit with and are wanting to get gifts for the kids. I should be able to get a count, gender and ages of the kids that will be there so I can go shopping for them. The bad thing is I can't really get that info until two days before. It is understandable since they really won't know who will be staying. They try to send as many kids home as possible for the holidays. We are in need of your help. We are hoping to get donations to help buy presents for the kids at the hospital. If you would like to help you can donate through Austin's website. After you have entered the website click on "contact". I do want to warn you that it says if you donate $50 you get an Austin's Fight bracelet, but I am out of bracelets and can't bare to order anymore at this time. I didn't have time to change his page and wanted to get this post up as soon as possible for those that want to donate. Any money that is left over will be donated to the Neuroblastoma Foundation in Memory of Austin.

I want to end this post with a poem I got in the mail today for Sister Stephana from our church. She has been wonderful to us by sending us mail to let us know she is thinking of us. She has followed Austin's Journey from the time he was diagnosed to the end.

My First Christmas in Heaven

I see the countless Christmas trees, around the world below,

With tiny lights, like Heaven's stars, reflecting in the snow.

The sight is so spectacular, please wipe away that tear,

For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs, that people hold so dear,

but, the sounds of music can't compare, with the Christmas Choir here.

I have no words to tell you the joy their voices bring

For, it's beyond description, to hear the angels sing.

I know how much your miss me, I see the pain inside your heart,

But, I am not so far away. We really aren't apart.

So, be happy for me dear ones, you know i hold you dear,

And, be glad, I 'm spending Christmas with Jesus Christ this year.

I send you each a special gift, from my heavenly home above.

I send you each a memory from my undying love.

After all, love is the gift, more precious than pure gold.

It was always mentioned in the stories Jesus told.

Please love and keep each other close as my Father said to do,

For I can't count the blessings or the love He has for you.

So, have a Merry Christmas, and wipe away that tear.

Remember, I'm spending Christmas with Jesus Christ this year.

Lunch for life.... Giving Tree in Memory of Austin...

2007-11-25T21:40:00.000-06:00

Hello Everyone,

It is that time of year again... Austin's Giving Tree is in need of oranaments to help find a cure for Neuroblastoma. You can go to the website www.lunchforlife.org and when it asks for a Giving Tree code enter 27124. This will give Austin extra ornaments for his tree. Thanks for stopping by and checking us and thanks for all your donations to help famlies not have to go through what we had to go through and lose a child.

Pictures.....

2007-11-22T19:51:00.000-06:00

Here are some pictures I got today from Austin's last Thanksgiving last year. My dad was holding out on me!!! He was babysitting Austin that day as I was helping my mom prepare for Thanksgiving dinner.. Enjoy the pictures!!

First Thanksgiving without Austin....

2007-11-22T10:57:00.000-06:00

Austin watching his video waiting on Cousin Dylan's arrival.

Austin and Dylan watching the Doodlebops.

Austin and Cousin Dylan a year ago eating at the Kids Table.

Today marks are first major holiday without our sweet Austin.. Although he didn't understand Thanksgiving and didn't like turkey, it is still hard not having him here with us to celebrate. We miss you Austin more and more each day.. There isn't a day that goes by that we don't think of you..

Austin has a SECRET!!!!!!

2007-11-06T20:27:00.001-06:00

Hello all,

I can't believe 7 months has gone by since Austin's passing.. We miss him more and more each day... He does have something to tell everyone and we know he is very excited to tell so when you scroll down and see the picture you can see what he has to say..............................................

Yes that is right... Austin is going to be a big brother in June.. We are expecting and very excited. I went to the doctor today and got our "first" pictures of the new baby. Every thing looks good with Austin's new sibling. We were so very excited to go tell Dr. Patel the big news as well as Nurse Delores and the staff. Everyone is so very excited about our blessing and we know who has had his hands in it... We miss you sweet boy each day.. I am so glad we get to share your brother/sister with all of your doctors and nurses. I sure hope the baby has your sweet smile!!!!!!

Goodbye Sweet Tigger...

2007-10-05T19:55:00.000-05:00

It has been hard evening for us... We lost our cat Tigger tonight... We know who she is with and know she will be taken care of but do know it hurts to lose another of our "family". Right now we are praying for our other cat Sugar as he is lost without her. We can't get him to come in the house as he wants us to come out side to look for her. We tell him she is gone and with Austin but he doesn't understand. He is just waiting at the front door for her arrival home. I feel so bad for him. I just worry he will be heart broken as I was when I lost my best friend. I sat outside with him this evening him telling him about how she made her journey to heaven to see Austin. Austin has one of his "key key's" with him, I would tell him. As that is what he called the cats "key key's".It is so painful that we have another loss one day short of the six month mark of Austin's death. I have to remind myself that I can do this, I can live, but it is hard.

We miss you Tigger and Austin... We know you guys are together and are in a wonderful place... We will all be together one day... We love you guys!!!

Looking back a year ago....

2007-09-27T19:03:00.000-05:00

SEPTEMBER 27, 2006.... I can never forget this day....It was the day Austin relapsed..He fought a hard battle for almost seven months thinking he was going to have the "normal" life again.. God had a different plan for him.

Austin... I think about you all the time... I dream about you...I miss you and promise one day we will be together again... Love you...Mommy

Reminder to eat at Chili's Monday September 24th....

2007-09-23T16:51:00.000-05:00

A blog follower had a T-Shirt made... I Love it Marie!!!

Hey Guys and Gals,

Just a reminder to eat at Chili's Bar and Grill tomorrow as 100% of the proceeds goes to St. Jude's in hope to find a Cure for Childhood Cancer. A couple of days later after last year's benefit, Austin relapsed. This time is so hard for me now to look back and think that the end was near and we had no clue. Thank you for all your support on helping other children like Austin fight the fight with Cancer.

Elizabeth

Austin singing "Fruit Salad" from the Wiggles

2007-09-10T19:18:00.000-05:00

Listen closely and you can hear Austin sing... This video and are a few others are all we have left of Austin's little voice. This video was taken while Austin was in the hospital over his Christmas stay.. Mom was bored and sad so took the camera and started using the video features... Hope you enjoy this video as much as we do... Keep checking back... More videos to come....

Austin Singing

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2007-09-06T21:05:00.000-05:00

I wanted to share this short video of Austin doing his "hot potato". I watch this video over and over to listen to his voice and watch his beautiful smile. This was one of Austin's last video taken and his last outing before he died. We cherish this video and a few others that we have.

Austin Doing Hot Potato

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September is Childhood Cancer Awarness month...

2007-09-06T18:24:00.001-05:00

Hey All,

Today marks five months of not having Austin here on earth. I find myself missing him more and more each day. I am crying right now just thinking about him. There are days I wish so much that I could have gone with him. I know it is selfish, but I just always felt that my purpose was to be with him. I try and live each day to the fullest as he would but some days I just want to sit and cry and want him back in my arms again. I miss my old life. My life is not the same without him. Having to get to lose your son and then having to learn a new life is so very hard to do. It can be done though. I am proving that, but it in deed is very hard. I pray to him all the time and he shows me signs now and then that he is around.

September is Childhood Cancer Awareness month. Every year Chili's Bar and Grill has a day where 100% of their profits goes to St. Jude's. Last year Austin was able to participate by eating his dinner at Chili's with his family. I wanted to make it a yearly thing for him to do. Even though he isn't able to, I still want to carry the tradition on. But do I not only want us to do it, I am asking everyone if they would join in and take time to eat at Chili's on September 24th. You can find more about it at their website. www.stjude.org and click on the Chili's advertisement. Even though Austin did not have treatment at St. Jude's, the still do a lot of the research for Neuroblastoma. Every little bit counts. I will do anything to get this horrible disease CURED in memory of Austin.

Austin eating at Chili's

What Makes a Mother...

2007-08-21T17:12:00.000-05:00

I usually only post on here once a month around the month anniversary of Austin's death but today I find myself turning to the blogger as I use to do when Austin was going through treatment... I found it helped me so much to vent my frustrations and show the love I have for my son... Each day I woke up I woke up for Austin... Today with out him here I find it being the same, I wake up for Austin... I could just stay in bed and never get up but I know he would be so mad at me.. I want to live life like he did, to the fullest.. I treasure so many memories with him and am thankful for the best two years of my life... I miss him so much everyday but know he is near.. He shows me signs to keep me strong... If it weren't for him I wouldn't be who I am today... I needed him in my life to guide me to that person.. I am lost without him but know I can do it, or at least try.

I feel that I have gotten a lot out of Austin's treatment and death and found others have too but there are a few that have not and that surprises me.. I know I can 't teach the world on this but I thought that Austin dying would. I was wrong.. If you think back what God did for us.. He sent his son Jesus to us to teach us. Could Austin been one of his sent to us to teach us?? I like to believe so... God's son suffered and died for us.. I think our son did the same.. I think Austin dying on Good Friday was for a reason, it was a plan from God. Maybe I am the only one that sees this, that I don't know and understand but I do know we are all here for a reason and know Austin was here to teach us because we have all learned so much in the the two years he was here..

Austin got a piece of mail the other day from the Texas Transplant Institute along with bills from the hospital, go figure... The one from the Texas Transplant Institute was an invitation for a reunion for fellow transplant survivors, living donors, and those waiting for transplants.. It is being held at Six Flags...Man did it hurt getting this as I know Austin would of loved to go...It is called "Celebrate the Gift of Life"...

As I have had many findings of Austin's left behind, one constant reminder of him daily is in my car.. in the back passenger side window lies his hand print... on the rear view mirror lies a few little finger prints... I never wash them away as I feel it is him saying "i am here with you Mommy"... I have tried and tried to take pictures of it and it is just about impossible but here is the best ones out of them....one of them there are two dots and when I first looked at the picture I thought they were eyes... to me it looked like Austin looking in...

Austin's hand print

Austin looking in...

One night as I was trying to go to sleep, all of a sudden I could smell Austin's breathe as he was laying there beside me... I knew one day he would come lay with me as we did every night...

A few days later after getting out of the shower I heard a child's voice who sounded like Austin say "WEEEEEEEE" like going down a slide....

I am grateful for these constant reminders that he is around... I am grateful that I had him in my life... I found this poem that I feel expresses how I feel..

What Makes a Mother

I thought of you all, I closed my eyes
and prayed to God today. I asked what makes a Mother
and I know I heard Him say,
A Mother has a baby.
This we know is true. But God can you be a Mother
when your baby's not with you?"Yes you can!", He replied
with confidence in His voice,
"I give many women babies,
when they leave is not their choice."Some I send for a lifetime
and other's for a day.
And some I send to feel your womb
but there's no need to stay. I just don't understand this God,
I want my baby here. He took a breath and cleared His throat
and then I saw a tear.
I wish I could show you
what your child is doing today. If you could see your child smile
with other children and say,"We go to earth to learn our lessons
of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
who had so much love for me
I learned my lesson very quick
My Mommy set me free.
I miss my Mommy oh so much
but I visit her each day.
When she goes to sleep
on her pillow's where I lay.
I stroke her hair and kiss her cheek
and whisper in her ear,
Mommy don't be sad today
I'm your baby and I'm here."So you see
my dear sweet one,
your children are OK. Your babies are here in my home
and this is where they'll stay. They'll wait for you with me
until your lesson is through.
And on that day that you come home
they'll be at the gates for you. So now you see what makes a Mother.
It's the feeling in your heart.
It's the love you had so much of
right from the very start. Though some on earth may not realize
that you are a Mother until their time is done.
They'll be up here with me one day
and know you're the best one.
Written with love
for all the Mother's missing their babies
by Jennifer Wasik

Memory Tree

2007-08-06T21:47:00.000-05:00

The Memory Tree at Methodist Children's Hospital

Austin's leaf on the Memory Tree

In front of the Memory Tree

How time flies... It has now been four months since Austin's death. It all still seems like yesterday to me. I know I feel him around but just wish I could give him a big hug and kiss. A friend of mine's little boy, Aidan, is two weeks older then Austin and was Austin's playmate. We use to say how they would be best buds growing up since they were so close in age. Little did we know Austin wouldn't make it pass the age of two. The little boy's mother told me today that he was playing with one of his toys and decided to put the toy down. It seems to be a toy that he never puts down. She asked him why he put it down and he said "Austin playing with it". She said it was plain as day. WOW!!!

The Memory Tree.... What a wonderful idea.. Methodist Children's Hospital, where Austin was treated and spent his last days, has a memorial tree on the 3rd floor. I was honored to put his name on the tree on Friday.. I thought the visit to the hospital would be harder then it was but it really wasn't. I was so glad to see everyone again and glad to talk to Dr. Grimley and Dr. Patel. I honestly didn't think anyone would recognize me without Austin since his smile use to take over. These are wonderful people that entered our lives and I was so torn when Austin died that I would lose them. They have all touched our lives in so many ways and although we had to meet them under horrible circumstances I have always been glad I have met them. I will always be grateful for them. As I am reminded that Methodist Hospital was our "second home".

It was funny too that day... during lunch at Cracker Barrel I saw Tony Parker and Eva Longoria!!!!! What a day.

The weekend before last we were blessed to hear Mark Schultz sing in Austin. He is an amazing Christian singer. We got to hear the wonderful song "He's my son" in person. If your not familiar with the song, it is a song written for this couple that Mark knew who's son was battling cancer. The song captures how Jason and I felt for Austin. We also were able to play the song to Austin hours before he died.

Austin - We Love and Miss you so very much and no your smiling at us from heaven!!!!

Elizabeth

"Little People"

2007-07-23T21:47:00.000-05:00

The Little People of Austin's that I have found through out the house. Two and counting.

Hey All,

People who all knew Austin knew he loved to play with his Little People. He had them all just about. He also would love to stuff them where they didn't go. Back in June I found one in between the TV and the TV cabinet. A famous spot where toys were always placed by Austin. Funny thing is I have cleaned many times there since his death and never saw it sitting there. Today while I was cleaning out the computer desk I found another one stuffed on the side by the printer. Another place I always look when I am printing something and still never saw it there. I know it is Austin letting me know he is around and I know when I find his Little People he is laughing up in Heaven. Thanks for memories and smiles Austin. We love and miss you.

Elizabeth

"The Rock"

2007-07-06T20:39:00.000-05:00

Well today marks three months since Austin has been gone from Earth. Boy and do we miss him every day. There isn't a second that goes by that I don't think of him. Today my parents and I went to a funeral, yeah that isn't where I would of liked to be three months later. It was actually kind of weird because it brought back so many memories that day Austin was buried. But the weird thing is when the priest was talking he talked about a friend that had just passed away from throat cancer. How the chemo and radiatoin took away his voice. I thought to myself, "will I ever be away from Cancer?" It seems that I hear this words all the time when I thought they would be gone by now. I was telling my mom today how I think that when you are given the death penalty that you shouldn't be shocked to death but you should be injected with Neuroblastoma and then they will tell you that they are giving you Chemo to help but in realty you get it to feel the suffering from the toxins. It may sound cruel but then they truley would know what suffering was like and we would know what the end would be like, Neuroblastoma kills. As you can see Cancer makes me angry!!!

This blog is titled "the rock" because there is a story about it. LOL I started to clean out things from Austin and yeah it was hard but I found some humor in it. I cleaned out a diaper bag that we used and in it I found two river rocks. I started laughing when I found them because I can see him putting them in there. He got them from Nannie and Pop's house and was known for going outside and bringing in the rocks. I guess he decided he was going to take some home with him. I thought it was ironic that he put two in there. yeah the first thing most would think one for each hand but my mind thought one for Jason and one for me. So now we each have a rock picked out by Austin. He loved rocks. Nannie has put some of these rocks he would bring in on his grave. I never look at river rocks without thinking of Austin.

Tonight we ate hamburgers for dinner and all I could think of was how Austin would of loved to eat his with the buns only please. LOL Every where I go and everything I do I always think about if Austin would of like it or not. Some times it makes me laugh and some times it makes me cry, heck sometimes it makes me angry. All and all it doesn't change it, he is gone. I know he is gone some times I just want to pretend it was all a bad dream and he really is here. How I would love to hold him once more, to hear him laugh, to see him blow his kisses or wave good bye. To hear him tell the dogs "get" or "go". To have him do his captin feathersword "arggg", to sing his Wiggle songs "fruit salad", to hear him call his dogs "mo" and "AE" (Gizmo and Abby), to hear him say "no" and see him shake his head no with it. Man there are so many things I miss and I wish I could just have him back to see them all again. I miss my Austin. Life is just not the same without him and it never will be.

Elizabeth

NB 2007 Conference

2007-07-03T19:18:00.000-05:00

"Above the Clouds" picture taking outside our plane window on our way home.

Lisa, Amanda and I first night at the conference

Sweet Cooper

Amanda and I on the streets on Chicago with and "Angel"

Amanda and I

We had a wonderful experience at the conference this past weekend. I wasn't so sure how I would feel about being there and to be honest at first I thought I made the wrong decision. That feeling changed after the first Angel Parent session. I finally was in a room of people that undstand the pain I am going through. We all could relate to the feelings we are having after losing a child to cancer, and not just any cancer, Neuroblastoma, the evil of them all. Hearing all the courages battles these children had to face lights a fire in me more to fight for a cure. It was hard seeing little bald boys running around and listening to parents talking about new treatments but that didn't keep me from wanting to find a cure. As they reminded me of Austin's fight.

We did finally get to meet the Cates Family and I really enjoyed talking to Lisa, Jason and watching Cooper smile. When Cooper sees pictures of Austin he gets the biggest smile on his face. I could only imagine the look on his face if Austin was able to be there to meet him. They would of had a good time.

My brain is still going ninty to nothing with all this information that I want to share on how we can help. Soon I will post ideas that I will like to accomplish to help raise money one to help find a cure for Neuroblastoma and two, to help to see about getting funding to have the conference every year instead of every two years. I feel two years going by is a long wait for an NB parent to be without new information on treatment. So we will see what we can come up with to help them.

Elizabeth

2 months have gone by...

2007-06-06T23:00:00.000-05:00

Wow it has been two months since Austin has passed away. Today it seems like forever. Today my mother and I went to Macy's and was so surprised to see a sign for Alex's Lemonade Stand Foundation. How wonderful. Macy's is one their sponsers. It was nice to see that. I am still having my good and bad days and some days I ask why him. I miss him more then ever and really feel lost without him. I am trying to do what I think he would want me to do and that is to move on with life. It is hard. All I want to do is sit here and hold him but I can't. I do believe he is around, his spirit that is. Little things happen and I know it is him. He is keeping me strong and helping me live each day. I use to wake up every day for him and now that he is gone I think, why get up, but I do. I know he would be so mad if I laid in bed all day. There are some times I can feel what I think is him nagging at me to get up. LOL. Well I better get to bed. I have a big day tomorrow. I have job interview.

Elizabeth

Austin's Gift....

2007-05-31T21:22:00.000-05:00

Every day that goes by I cry tears of saddness that Austin is not here. My arms are empty and my heart is broken. I look at pictures of him and think, why did he have to go so soon. He gave us such joy that we will cherish always. Some days it feels like yesterday he was here and others it feels like he has been gone for eternity. Sometimes I have to remind myself that he did once live here on earth and now he lives in our hearts. I got an email today from a friend who's co worker participated in a bike ride in memory of Austin. One of her team mates was very touched by Austin and he didn't even know him. It amazes me on how Austin has touched so many people in so many ways. Austin has taught us more in two years then in a life time. I wanted to share what my friend sent me.

”Because of Austin, I find it easier to ride when it is hard to pedal”
Kurt Steuck -TNT Alumni

Austin's Gift I joined Team in Training because of my son, Kyle, who is doing well after a battle with Hodgkin's Lymphoma. He went through chemo, radiation, and a stem cell transplant (May 2002). He has been involved in the Leukemia and Lymphoma Society in Austin, TX, and in Seattle, WA, while working on his master's degree in engineering. During the past three months of training, we've had several Honored Heroes and Mission Moments. None have affected me the way Austin does. I use the word "does," because he still does. This is Austin's Gift to me.

This began on Saturday, April 7, a cold, windy, rainy day. The TNT Team was going to ride in relatively flat land southeast of San Antonio. In our pre-ride talk, one of the LLS staff read the Mission Moment about Austin. I was trying to focus on it, but the rain and cold kept distracting me. And then I heard the words that he wasn't doing well and he might not make it through the weekend. When I heard those words, an intense cold wave went through my entire body starting in my chest and working out. I haven't felt anything like that in a long time. It was not due to the weather. It was due to the words I had just heard. He might not make it through the weekend.

While we were riding, the weather turned worse. There was a 30 degree wind chill that day. We were miserable. Only 12 riders finished 45 miles of the intended 60 miles. The others did not finish. During the worse parts of the ride, I thought about Austin. I realized that as miserable as I was, I would be warm and dry in a few hours. Thinking about him made it easier to keep pedaling.

The second time Austin affected me is when we received the email with his picture in it. Three things struck me about that picture. One, because it was from the back, I never saw his face. I would never know Austin. I had been thinking about him, but would not know him. The second thing about the picture was the costume. To me, it didn't stand for superman strength and courage. Instead, it symbolized the gaiety of childhood, that unbridled giggling and squealing children are famous for. It reminded me of what a childhood should be like. The third symbol in the picture, though, was his lack of hair. This symbolized the grim reality too many children and adults face. It was hard for me when I thought about that. It reminded me of why I joined TNT.

Then I read the description of Austin's last moments. That's when I lost it. That's when I broke down. That's when I knew: I ride for Austin.

I Love Austin....

2007-05-20T22:49:00.000-05:00

A Myspace friend posted this on Austin page

this is the T-Shirt I bought

Hey all,

I have been home sick all weekend with some kind of stomach bug. I haven't been sick in a long time. That was one of God's blessings, keeping us well for a year and a half. When my stomach hurt so bad I thought about Austin all the days of chemo he went through and how he kept on going and here I only had a stomach bug. He was a true fighter. A true inspiration to us all. Since I have been laying on the couch all weekend all I could do was think of him. How he would of come up to me to give me a hug because I didn't feel well. I know he came to visit me on Friday while i was taking a bath. See when I would go into our bathroom and shut the bathroom door I found that Austin learned to open the door and come in. I had to eventually teach him to shut the door after he came in. He learned quick. While I was taking my bath on Friday the door opened as if it were him coming in. I said come on in Austin. I felt like I could feel him there next to the bath tub. Wow what a moment.

Another NB fighter lost the battle on Saturday. Penelope was four years old. Her cancer had progressed a while back and she still was fighting. I remember reading her blog and thinking, I feel for her parents because the were watching their child die. Little did I know I would do the same a few months later. I read on another NB fighter's blog where her mother wrote "We have watched so many sweet, smart, vivacious, Innocent children die over the years and my heart asks the question why isn't this the topic of every discussion on earth?". I couldn't agree with her more. I think about it all the time and just can't stop thinking about what else can we do? My sister in law and I are going to the Neuroblastoma Conference in Chicago this July and hopefully we can find out more of what we can do. They have a session for Angel parents that I am very interested in going to. We are very excited as well to meet our NB friend Cooper and his parents Jason and Lisa. I feel like I have known Lisa all my life as we have lived the same life for a year and half. Cooper is in remission and right now and is doing very well. Cooper is two weeks younger then Austin and were diagnosed just less then a month a part. The Internet brought us together. Thank God for the Internet.

I have posted for you a picture of a shirt I bought on Friday. I went to the mall to drop of my charm bracelet, I passed by this store that sells Texas Longhorn apparel. I had to do a double take at what I saw in the window. As from the picture you can see what I saw. I walked in picked up the shirt and bought it and I wear it proudly.

Happy Mother's Day......

2007-05-13T15:10:00.000-05:00

A sign from Austin. A longhorn cloud.

Today is harder then my birthday. My mom has been gone on a retreat since Thursday and came back today. We went to a candlelight ceremony as a surprise for her last night and all I could think of was Austin. How he would of loved to have been there to surprise Nannie with a big smile and a hug. That's what sucks. I get to do all these things now but I don't have Austin with me so it is like I don't care about doing things anymore. Like going to functions and going out to eat. We were so isolated that it got to be "normal". Today we went to church and today was when my mom came back from her retreat. Father had all of the mothers stand up to do the mother blessing but I couldn't. I knew I would just stand there and cry. I sat and cried instead. While he was giving the homily this noise from the ceiling (I think it was the speaker) scared him. He laughed and was making jokes about how he was scared of ghost. All I could think of was it was Austin scaring him. Oh how he loved to scare people. It was so nice to see my mother again. I haven't been this long away from her. She is my rock. She got me through Austin's treatments and now is getting me through him being gone. Being away from her is like me being a little girl again. I felt lost.

After Church I visited the cemetery. I sat there and cried. I told Austin there are so many people here today visiting their mothers for Mother's day and here I am a mother visiting her son. Was so weird. I let out a lot of things to him today and I feel much better now. I always get this feeling like he is really listening. He always has been a good listener to me when he was alive. Even though he didn't understand. In ways he did understand. I would tell him stuff and he would just look at me and sometimes gave me hugs. He always knew when I needed a hug. Boy I miss those hugs.

On another note, I got an email from a NB friend Cooper's mom. She said they got a sign from Austin. It was a Cloud in the shape of a longhorn. She sent me pictures so I have posted one for you.

I hope everyone has a wonderful Mother's Day and a wonderful Sunday!!!

Elizabeth

Austin Video

2007-05-11T21:25:00.000-05:00

Cousin Dylan, Cousin Emily and Aunt Amanda

Austin's light

It's been hard today but only a few hours more to go and I will make it thought it. You see today is my birthday and all I wanted for my birthday was Austin to be here with me to celebrate. Luckily I have been in Round Rock for the last few days with Aunt Amanda, Uncle Jerry, Cousin Dylan and Cousin Emily to keep me busy. They light up my life.Though it is hard not having Austin there because I know he would love to play with his cousins. He would love to have Uncle Jerry and Aunt Amanda spoil him. It is just so hard that he can't be there but I know it is especially hard for his Cousin Dylan. He talks about Austin all the time. About how Austin's an angel in heaven and has wings. I took the kids on a walk while I was there and Dylan said the sun is gone and I told him it wasn't gone it is up there in the clouds with Austin. Dylan yelled out, Austin give us the sun back. Oh how that made me smile.

Jason and I went to dinner tonight and a few tables over was a little girl who they sang Happy Birthday to and it was her 2nd Birthday. I teared up. Then we were sitting at a table with three chairs. They came by and asked if anyone was going to be sitting in the empty seat and we said no so they took the chair. It hurt. It was hard but I held back the tears the best that I could. But now I find myself at home just letting it all out. I got a message from a blog follower and it said that her grandfather found he had lung cancer on April 3rd and he wasn't going to make it. He died this morning but before he died she was able to talk to him about Austin. She wanted to make sure he found Austin and to make sure he was okay. He said he would find him and rock him to sleep for us. I have never met this man but all of a sudden I could imagine him in this rocker with Austin just a rocking away. So funny how the mind works.

Today I went to the cemetery to visit Austin and make sure his flag was still flying, and it was. Finally they have Austin's light up. I have posted pictures of it for you to see. Also at the end of this entry you will find a slideshow with a song that we sing to Austin up in heaven. Click on the link "Austin's Journey" to watch. Hope you enjoy.

Austin's Journey

One month ago today......

2007-05-06T22:21:00.000-05:00

Austin's new friend Curious George

The butterfly that I have placed on his vase

The ducks at the cemetery

Wow I can't believe a month has gone by since our little boy went to heaven. It seems only like yesterday. We went to the cemetery yesterday for our usual Chick-fil-a lunch with Austin. Uncle Alan came with us too. We had a nice lunch and changed out his flowers. I decided to add some things to his grave so today I put out a Curious George plush and attached it to his vase. I also found a butterfly that reminded me of Austin. I had seen another grave where they put a garden flag in the vase so I did the same. I have attached pictures of the Curious George and butterfly. I don't have any of the flag yet but I will go take some this week and post. On the way into the cemetery today there was standing water that has accumulated from the rain and in it I found ducks swimming around. I thought it was so cute so I took a picture.

Not much going on here in the Akin house. I have been having more bad days then good. I get these clear images of Austin in my head and they make me cry so much because I just want to hold him so tight. When these images happen they are usually at night when I am trying to go to sleep. I find myself running to Austin's room where I sit and read a Curious George book out loud. I bought this book awhile back to read to Austin but never got the chance. My dad told me the other day, "it isn't too late. You can still read it to him now." Man was he right. It feels good to read it out loud because I know he is listening.

Tonight we watch some of show on the Discovery Channel "Living with Cancer" hosted by Ted Koppel. It was kind of hard to watch and I was only able to watch some of it. I am finding more and more information on cancer now then before and I am glad in away. In away I am glad that I wasn't so overwhelmed of knowing how cancer is killing more and more and we aren't finding cures and I am glad that I lived each day to the fullest with Austin not knowing when his last day was going to be. Having cancer as an adult is way different then a child with cancer. Listening to them talk about how painful the treatment was killed me. Luckily Austin didn't show that. He would just go about his day like any other little boy. Hearing about it now makes me think of Austin as a true super hero. I some times think that he was made out of steel and in the end the steel finally got rusted out.

As Christi Thomas' mom says, each day that that passes it gets harder. I look at pictures of Austin everyday to remind me that he did exist on earth. Nothing seems real anymore. Life is so different without him and it is hard to wake up each day knowing I don't have him here to take care of. I cry days thinking to myself, am I a mother anymore? I have those mother instincts but not a child in my arms. Other days I tell myself, Yes your a mother. Your child is just an angel in heaven.

Team Ben Milam Elementary - "Hot Tamales" Spicing Things Up for a Cure!

2007-05-02T22:00:00.000-05:00

Thank you everyone who has donated so far to the Relay for Life that Aunt Jennifer is participating in. She has reached here goal of $750.00 but I think maybe we can improve it to $1000.00. She will start the relay this Friday so anyone who still wants to contribute still has time. Remember your contribution is helping in the fight to find a cure. I can imagine Austin looking down and being so proud of all of us on what we have accomplished.

If you would like to donate, please visit the website (or click the link to the right):

http://www.acsevents.org/brazoscountyrelay/jennag02

Thanks again everyone…we appreciate the love and support in raising money in memory of precious little Austin.

Austin in Spirit.......

2007-04-29T23:23:00.000-05:00

Austin's temporary marker

Austin's grave with his new vase full of red roses.

Gizmo and Abby next to Austin's grave

Austin back as a butterfly.

Austin may no be here on earth physically but I sure feel he is here in spirit. I have felt him at numerous occasions. Although some days I find myself thinking I am going to wake up and find Austin laying right next to me but when I do wake he isn't there. Jason and I have been going to the cemetery on Saturdays and having Chick-fil-a with Austin. It was one of our favorite things to do on Saturdays while he was going through treatment and not allowed to go anywhere. So we would always go through the chick-fil-a drive threw and either eat it in the car or head home to eat it. Saturday I put our roses for the first time in Austin's new vase. We still haven't decided on a headstone but are working on it. I have been wondering the cemetery looking at every ones headstones and it makes me very sad because in the few minutes that I looked I found many people my age.

Today I decided to take the dogs to visit Austin at the cemetery. Although they couldn't figure it out. I would say here is Austin and they would look around for him. Finally they sniffed and sniffed and laid right next to his grave. Oh so sweet. They just laid there peacefully.

2007-04-29T18:55:00.000-05:00

Thank you to those who have already donated to "Aunt" Jennifer's Relay for Life team, she has raised $500 so far and only needs $250 more to reach her final goal of $750.

If you can donate $1, $5, $10, or anything, it would be greatly appreciated. Also, we ask you to pass this information onto friends and family members if you can so that they can also participate if they are able.

We just wanted to send out a FINAL reminder to make your donations this week if you plan to participate as the Relay is this coming Friday, May 4 thru Saturday, May 5.

If you would like to donate, please visit the website (or click the link to the right):
http://www.acsevents.org/brazoscountyrelay/jennag02

Again, thank you for the donations so far... We appreciate the love and support to raise money in memory of precious little Austin.

Donate in Honor of Austin

2007-04-26T02:33:00.000-05:00

Hello All,

Jennifer Ripple ("Aunt" Jenn) will be participating in the Bryan-College Station Relay for Life. She plans to walk this relay in memory of Austin as well as other family members that have passed due to cancer.

Austin has become one of the inspirations of the "Hot Tamale" team.

We have to find a stop to cancer! If you would like to donate, please visit the website at:
http://www.acsevents.org/brazoscountyrelay/jennag02

or the link to the right. $1, $5, $10, $20, or whatever you can afford will help us find a cure for Neuroblastoma as well as all the other types of cancer.

If you prefer to donate offline, you can print out the form located on the above website and send it in with your check.

We all would appreciate your help and support in an effort to raise money to find a cure for cancer.

My baby is gone.....

2007-04-15T18:45:00.000-05:00

I can't believe a week ago has gone by since Austin has received his wings. We have been very busy with plans and finally we now feel the quietness in our home. I find myself still strong for others, but weak when I am alone. My biggest thing is I can't hold my little baby anymore. Except for the night after he was born, I have never been away from him. Luckily he is just buried down the street. That was one reason I picked Holy Cross Cemetery. The other reason is I always wanted to be buried near the mall. HaHa. I have been out about every other day to the cemetery to visit Austin. It is just so hard to believe he is there and not at home just taking a nap.

I have had a few signs that I feel Austin is telling me he is near. One morning the dogs woke me up at 2:22 A.M. When I sat up in bed I noticed that I was able to see and it wasn't pitch black. When I opened the front door to let the dogs out the sky was purple. I have never in my life ever seen such a thing. It was so beautiful. Maybe he was painting us a picture. Another thing I noticed at the funeral when I bowed my head down to pray. On my charm bracelet I have a charm that has Austin's first picture (the hospital picture) and when I looked at the charm I noticed that my angel charm was attached on the same link. I couldn't believe it. I never paid attention to where the store had placed the charms. One other sign was when I was in Round Rock for my Nephew's birthday party. It was at their local park pavilion near a bunch of soccer fields. Amanda and I were setting up and all of a sudden there was this little boy standing in a yellow rain coat in the middle of the pavilion. He looked up at me and said "I lost my Mommy". When I looked at him I thought to myself, Austin is that you all grown up? All I wanted to do was scoop him up, put him in the car and take him home. But I knew I had to find his Mommy and I did. I kept thinking about that little boy all day and on the way home from Round Rock I cried because I think it was Austin telling us he was there.

Austin's services were beautiful. We dressed him in his little tux he wore for Valentine's Day. The funeral home placed his blanket on his side between his arm as if he was holding it, just like I asked. Still to me seeing him in his casket, I felt he was just sleeping and any minutes he was going to pop up and laugh, but he didn't.

I am not sure how often I will write on the blog. I feel so different now. Almost like I quit my job. It is funny how just in a blink of an eye your life can change. I experienced that once on October 4, 2005 and now again. This time I just feel so lost. Like I am not quiet sure what I am suppose to be doing. Especially at night. It is so weird getting uninterrupted sleep. We have many projects around the house that we had put off to keep us busy. But tomorrow will be a hard day for me. It's the day Jason goes back to work. Then I will be all alone in the house. I haven't been all alone. Any time he says he is going some place I tell him I want to go too. So tomorrow marks a new day for me. I trust in God to help me get through the day.

I want to end this entry with the Eulogy from Austin's service given by "Aunt" Jennifer Ripple.

I remember the night that Uncle Alan introduced me to Austin’s story through his website. I was immediately overcome by emotions as I read this little boy’s story. Austin’s fight instantly became an inspiration to me and an important part of my life.

Austin’s contagious smile taught us all how to live, laugh, and love.

He taught us how to live by placing a smile on his precious face at every moment during his courageous fight. He passed on his courage through his high fives. His dad taught him to high five as a form of affection and Austin took it to another level by passing on high fives to other family members, friends and even other cancer patients.

His laughter could be heard through his Wiggles song and dance, especially his favorites, “Hot Potato” and “Fruit Salad”. Austin loved to play games, especially jumping out and attempting to scare you or standing still with his eyes closed and act as if he was not there in hopes you would disappear. He always knew how to put a smile on your face and make you realize that the little things are what really matter in life.

He taught us how to love in more ways than we can count. He taught his parents how to love one another stronger and deeper. He taught me how to love myself and how to better love another person. Through his mother’s words, Austin taught so many people across the world how to love a child that they have never met.

The contagious smile we often speak of is now the smile of an angel. Austin's life would seem too short to many, but those who were touched by him understand that the quality of existence far exceeds the quantity of time in which ones lives.

My perspective on life is forever changed thanks to him, and for that I’ll be eternally grateful.

I would like to conclude by reading a poem that I think many of us feel represents Austin’s Fight --
God saw you getting tired,
When a cure was not to be.
So He wrapped his arms around you,
and whispered, "Come to me".
You didn't deserve what you went through,
So He gave you rest.
God's garden must be beautiful,
He only takes the best
And when I saw you sleeping,
So peaceful and free from pain
I could not wish you back
To suffer that again.

Obituary

2007-04-08T13:28:00.000-05:00

Austin Foster Akin was granted his angel wings on April 6, 2007, at the tender age of two, following a courageous year and a half battle with Neuroblastoma - a childhood cancer. His final days were spent surrounded by family and friends that Austin had touched in some way throughout his short, yet very memorable life. Austin's life would seem too short to many, but those who were touched by him understand that the quality of existence far exceeds the quantity of time in which ones lives. His contagious smile could melt the hearts of those around him and though he only spoke a few words, his voice and thoughts could always be heard. Austin is survived by his parents, Jason and Elizabeth Akin; grandparents Mike and Lydia Lipscomb (Pop and Nannie), Harry and Brenda Akin (Pa and Grandmama); great-grandmother Ima Dee Akin (Mama Dee); Uncle Alan Lipscomb; Uncle Jerry and Aunt Amanda Caperton and cousins Dylan and Emily; Uncle Justin Akin and Aunt Yari Jiminez and cousins Bailey and Brenda; along with our extended family, including Dr. Mahendra Patel, Dr. Michael Grimley, Delores Hagen, and the staff at Children's Methodist Hospital. The family will receive friends on Tuesday from 6:00-8:00 P.M. at Porter Loring Mortuary North.

Service
Wednesday, April 11, 2007
10:00 A.M.
Our Lady of Perpetual Help Church
16075 N. Evans Rd
Selma, TX

Interment will follow in Holy Cross Cemetery. In lieu of flowers, please make donations to Alex's Lemonade Stand Foundation at www.firstgiving.com/austinsfight.

Your invited to sign the guestbook at www.porterloring.com

Fight to the end.....

2007-04-06T19:24:00.000-05:00

The last twenty four hours with Austin have been hard for me as he was fading fast. All I could do was look at him and remember all the fun times I had with him and what a wonderful child he was. Last night he truly showed us a miracle, not the miracle we all wanted but it was indeed a miracle. We saw that Austin was becoming more distant so I swept him up and we started praying. The nurses started to increase his morphine to make him more comfortable. They brought in the black soft rocking chair that I rocked Austin many times in during his first transplant. I sat in the rocker and immediately noticed that Austin fell into a coma. His breathing was shallow and his congestion was getting louder. They continued to increase his morphine and then it happened. I was holding Austin's hand and he squeezed my hand, harder then anyone has ever squeezed it. I immediately screamed out and started crying. He lifted his head and then took a breath. He was gone. He wasn't breathing and didn't have pulse for ten minutes. They unhooked him from his cords as we all sat there and cried. Then the unthinkable happened. He started breathing again and got a pulse back. We could not believe it. The nurse could not believe it. All the five years that she has done the hospice nursing she had not seen this. Austin just didn't want to give up his fight. All he has know is too fight. He came and went a few more times, never gone more then five minutes. He finally settled down and had steady breathing. We couldn't figure out why Austin was hanging on but wonder if he needed to still say goodbye to his doctors and nurses. His favorite nurse Delores came in and talked to him about going. Then Dr. Patel came in and told him it was time. Patsy came by to say good bye and Dr. Grimley told him to rest. He still fought. Dr. Patel later came back and said Austin's body had built up a tolerance to the morhpine and need to switch him to something stronger. They would slowly wing him off the morphine and increase the new drug. When the morphine was threw I noticed Austin's breathing changed. As they increased the dose of the new medicine, the less breaths he took. Finally at 3:55 this afternoon Austin took his last breath and earned his angel wings. He is now about the clouds in a better world where some day we too will be with him again. When we were for sure that Austin was gone, I swept him up in my arms and held him for one last time. He was so peaceful and so was I. I could feel his spirit leave his body and it gave me a sense of strength. Austin taught me strength. How I am doing it I don't know, but I am the strong one right now. I have taking care of Austin for so long and that is all I know how to do but now it's time for me to take care of Jason as he is not as strong as me right now.

As Austin laid there on the hospital bed peacefully, I managed to cut part of his "blankie" off for myself to keep. I left him with the rest of his blue blankie, his Wiggles blanket and the beautiful quilt that Dr. Patel's daughter made for him. Saying good bye and leaving Austin behind today was the hardest thing I have had to do. Austin has never been away from us but for one night and that was the first night he was born. I left Austin in good hands at the hospital with his favorite nurse Delores. She was going to sit with him until the mortuary came to pick him up. I felt to she needed to spend some alone time with him as she has been by his side since day of his cancer fight. She said to him,"we started this together and we're going to end this together". Delores also had her own battle with cancer as a child. So she can relate to all the treatment Austin has been through. After we said good bye it was time to leave our second home. I had my brother take the car seat out of the back of my car so I wouldn't see the "empty" car seat. When I got home Jason was already home sitting on the back porch holding one of Austin's tennis shoes. I felt so bad for him as I wanted to come home first so I could put all of Austin's things away until we were ready to look at them. I managed to do this with a few break downs. It was hard putting his high chair away but most of all it was the worst when I found his Wiggle's pillow on the couch.

Right now I am sitting at the dinning room table writing this blog and the house is so quiet. No little toddler noises through out the house. Just the sounds for eight little paws running around. It was hard for me to tell the dogs that Austin wasn't coming home as I feel that sense something is going on.

I am so proud of Austin and his courage for wanting to fight for so long. He is truley and inspiration to me and to many more. He has taught me so many things in life and one is how to love. I am so glad that I could be a part of his life and just wish I had more time with him hear on earth. I whispered in his ear that I will meet him on the other side and how we can go to Disney World in our dreams. I asked him to be Cooper's and Aidan's guardian angel and watch over their lives.

We want to thank all the many readers for their prayers and support, Dr. Patel and staff. Methodisth Children's Hospital staff and Delores and Dr. Grimley. We have busy days that lie ahead of us to plan Austin's journey to Heaven. As soon as I know details of everything I will put it up in a post. Thanks again for all that everyone has done, Austin could of kept up the fitht without all of you.

Elizabeth

Still Fighting

2007-04-06T12:58:00.000-05:00

Austin's long and hard fought battle with cancer is slowly coming to an end, though he is having a hard time saying goodbye. Dr. Patel is accommodating him with plenty of pain medication to make sure that he is comfortable. Please pray for Austin, so once he decides to take his wings, that his crossing is a pleasant one.

Elizabeth or I will update later if there is any new information.

All too soon....

2007-04-03T14:46:00.000-05:00

Okay, where to begin. For Austin's birthday we had a CT done of his neck, chest and pelvis. They came in and gave him a cake presents and sang Happy Birthday to him after he got back from the scan. Then a little while later Dr. Grimley and Delores (our favorite nurse from clinic) came in. He leaned his body against the sink and said "we found something" and then just starred and looked at me. I knew right then what he ment. I then replied, "the cancer is back". He said "yes, very bad too". From the report of the CT scan they said the cancer was everywhere. It was even in his spine which is the reason he can not walk. I broke down and cried and then asked."what do we do?". Dr. Grimley responded with "nothing, the cancer is too aggressive." We have asked how much time we have with Austin but they have only told us a while. I think Austin has shocked all of Methodist Children's with this news. I thought that a CT scan for his birthday was bad but this has to be the worst present ever. Grimley said " I didn't want to have to give you this news today but didn't think I could keep it from you." I agreed. We needed to know. Austin is comfortable now. He has a morphine drip going at all times. He mostly sleeps and is still eating and today he finally decided to drink his milk. I have said in the past blog that writing about Austin's relapse was the hardest blog to write, but I was wrong. A blog telling your readers that your son went from a newly transplant patient in remission to relapse number three has to be the worst.

I am still numb and don't understand it all but I am trying to be strong for Austin's sake. All though it seems Austin is trying to be there for me. I cried my heart out when I heard the news and he just looked at me like "mommy it's going to be alright". Jason and I have decided to stay at the hospital until it happens as I don't think I could deal with this at home. We have many family members and friends that have come up to show their support and we are very greatful that we have them with us to end this journey. A long journey I must say but all to soon.

The staff here at Methodist has been wonderful to us with accomidating us in every way. They have turned the care back over to Dr. Patel who will keep Austin comfortable to the very end. They have not given us a real time frame as to when he will go but Patel has said today that he wants us here at the hospital with our "family" (the Methodist family) here. I agree on this, as the hospital has become our second home. I will keep everyone update on his journey to the end and do appoligiez for getting this blog to you so late but I honesty didn't know if I could write this. We needed to let our family get the news from us and not from the computer. Thank you for the continued prayers and support as we couldn't of gotten where we are today without each and everyone of you. I feel the end is near and my heart is broken and know Austin will carry that piece with him. I have asked him to wait for me on the other side and then we can do all the things we never got to do together. He will then be free of pain and cancer and can be the normal little boy I have always prayed and hoped for.

I want to end with a poem that our Neuroblastoma friend Cooper's Mom feels reminds her of Austin.

Elizabeth

Hope -Jarred Meteau

A seed floating in the wind with no direction
Slowly fading away, it has no protection
Lands on the bank but sees no reflection
A choice must be made, life's intersection

Grow into a tree or fade into the past
Soar like an eagle, this spring may be it's last
A decision must be made before the dead of night
Is it time to lie down and die, or is it time to fight

It made the right choice and decided to grow
But wasn't its choice to make, of this it did not know
Already determined the seed would never be a tree
It dreams of a better life but hope is all it will ever be

Austin heads back to Methodist...

2007-04-01T21:30:00.000-05:00

Sorry for the delay in posts. It has been very tiring in our household. Austin has had a few bad nights. Clinic went fine on Saturday. He got fluids and his labs looked good. He said as long as he kept up his fluids he didn't have to come in on Sunday but would have to call to report a follow up to the Bone Marrow unit at 9:30 on Sunday. Austin also has had a lot of trouble walking. We think his feet are still very sensitive but he also tilts his head back like it is to heavy for his body. Not sure what is going on with that. He decided to start crawling again since he can't walk. Still trying to be so independent. Last night was the worst night ever. He would only sleep for 30 to 45 minutes at a time and then be up screaming from the top of his lungs the rest of the time. He would want to lay in his bed and then wanted the couch and then back to his bed. He just couldn't get comfortable. He would call me over to him and then push me away. He didn't know what he wanted. He was pointing to have movies put on and then have you turn them off.He stopped wanting to drink from his sippy cup and would only sip a little bit out of a straw. It was such a long night. He was miserable. I had to call the floor and they thought it was gas pains. He had taken a medicine earlier that day to help him have a bowl movement and said it could gas pains later on. They had me give him some benadryl to see if that would help. It didn't. I gave him a warm bath which he enjoyed. He actually was falling asleep in the bath tub and didn't want to get out. When I was putting on his diaper after his bath he expelled a lot of gas, so it could very well have been gas. But he still was not sleeping. At 3 am I took him for a car ride to see if that helped. He did indeed fall asleep but as most kids he woke up as soon as we got home. 9:30 am couldn't come soon enough to call the floor again for follow up. I told the nurse what was going on and she said she would let Grimley know and see what he says. Wasn't but a few minutes after I hung up the phone that Grimley was calling back. He said sounded like he needed to see him so he would call back after they got arrangements done down in clinic. About a half an hour later a nurse called from the hospital to tell us to head over and prepare to stay. I asked to stay for the day or over night? She said overnight, they are admitting him. So I packed a few things and we headed over. They hooked him up to fluids, drew his blood for labs and gave him some morphine to relax him. Grimley came in and feels that it still could be a drug reaction and it very well could be another drug doing it. So we are backing off some of his drugs. He said it sounds like insomnia which one of the meds has as a side effect. It is a rare side effect but can still happen. He suggested we try and keep Austin up as much as we can during the day and then before bed give him a drug to relax him to sleep. He is also ordering a CT scan from his neck down to his waist. Not that he thinks anything is going on but wants to rule everything out. He did say he didn't think it was any thing to do with the Neuroblastoma as he would think if it was he would of found some in his brain. As Dr. Grimley says "we are on a wild goose hunt". He said he was still puzzled and was going to pick someone else's brain to see if they could come up with anything.

Austin and I took a nap and then I had to wake him up. Boy was he not happy. It was so hard to keep him up. I got him to drink 2 ounces of juice and we watched movies. He ate some mini vanilla cookies but didn't want anything else to eat or drink. For some reason he doesn't want to drink the milk. The only reason he drinks the juice is because it is kind of forced upon by me. I use the Juicy Juice box drinks so when Austin puts the straw in his mouth I can control more going in by squeezing it. He drinks it but pushes it away.

In a way I am glad we are here because maybe we will get a good nights sleep. They can control his pain and frustration here with drugs, at home I can not do anything but try and comfort him. I am sure this is not the place Austin wanted to be for his second birthday but as bad as he feels right now I don't think he would care too much about celebrating. I am praying tonight that they can find out what's causing all of this and that is is fixable and we can have our old Austin back. I miss old Austin so much. I miss my hugs and love from him. I miss him dragging all of his toys out to the living room. I miss seeing him run around all over the house chasing the dogs. Please lord, help us find out what is going on with Austin and to bring our old Austin back!

Elizabeth

Cyclosporine

2007-03-30T20:02:00.000-05:00

Well Austin's 8:15 MRI got moved to 11:15 and it was noon before they took him to the scanner. Dr. Grimley also wanted to do a lumbar puncture in Austin's spine while he was under sedation. This is a type of blood culture where he can see if there is any viruses in his spinal fluid. Dr. Grimley did this right before the scan. It was almost 3:00 before we got back to the room. When we got back Austin drank 4 ounces of milk right away. About 3:30 Dr. Grimley came in. He said the MRI wasn't really conclusive on finding the drug side effects on the brain. He did comment on the tissue behind the eye again. He said once again it hasn't gotten larger but in the three dimensional view it does look like it has gotten somewhat smaller. He did say that there was a spot on the back of Austin's head, he called it something but I can't remember the word he used. It has a little fluid there basically. He said he didn't think it was Neuroblastoma and it was there on the last MRI. He said the will do another scan in a few weeks and check it again. He said it was probably something they will just continue to watch. There was no virus found in the spinal fluid. He said now looking a the bigger picture he feels it is Cyclosporine Toxicity. His levels of the cyclosporine in his body are still high and he was been off the drug for days now. A lot of the side effects lean toward that it is the cyclosporine too. It will take a little while for it to get out of his system. He will start another drug Prograft this weekend. He said there was nothing else to do so he was sending Austin home. Yeah!! So yes we are home.When we told him we were going home he was ready to leave right then. He asked for my purse (which means bye bye we go).We tried to explain to them that we had to wait for the nurse. Yeah good luck explaining this to a two year old. So finally after the nurse took his needle out Nannie got Austin dressed as I went over discharge instructions with the nurse. He brought over the hospital blanket that I had been using. I guess he thought it was mine. He was wanting me to bring the hospital blanket home. He was so silly. We do have a clinic appointment tomorrow morning for his blood draw and to check his fluids. He is SOOOO happy to be home but is very needy. Not trying to be mean but I have to carry him every where because one, he doesn't have the strength to walk and two, his feet are still real sensitive. I just gave him a bath and he is laying on the couch watching movies. He did eat some of his pizza. Austin seems to better but not at all yet himself. It is going to take some time. So each day he will get stronger and more and more back to himself again.

Elizabeth

Still trying to figure it all out......

2007-03-29T14:25:00.000-05:00

Well Austin is somewhat better today, but still not himself. All he wants to do is sleep. I did get him to eat some baby food bananas this morning but only able to get him to sip on his drinks. We are still having to give him Tylenol as he has some kind of discomfort that we can not figure out. Grimley feels that if he sends him home today we will be right back in tomorrow with dehydration and I agree. He wants to do an MRI of his head tomorrow morning. You can get a better picture of the brain on an MRI. He is puzzled as to what is going on with Austin though he feels it is either the side effects from radiation or one of his medicines, cyclosporine, that can effect the brain. Both can go away with time. He has checked for viruses in the blood and the urine and they all come back negative. Dr. Grimley said it could be graft vs. host disease but with that you have diarrhea and he doesn't have that so he throws that one out. He did finally have a bowl movement last night and just had another one today. He hasn't been as cranky today as he has been the last few days and in fact he just got up and was talking to Nannie and I some. I asked him if he wanted his toys and he shook his head yes. He did this yesterday but it only last a few minutes and once again it didn't last long today. He is still up though watching Shrek but doesn't want any of his food or drink. I am going to try the baby food bananas again and see if he will eat that. I hate forcing things in him but with Austin if you do a couple of forceful bites he starts eating it. Then too he will be NPO tonight if they are going to do an MRI on him tomorrow so that doesn't help with the eating and drinking process. So hard right now on him. It doesn't help that he is turning two and going through the terrible two's and possibly could be teething. We will see how our night goes and how the MRI is tomorrow and go from there.

Elizabeth

Scan complete....

2007-03-28T14:34:00.000-05:00

We got back to the room form the scan at around 2:00. They only had to give him laughing gas and not general anesthesia for the scan. It is a very quick scan. Wasn't too long after we got back when Grimley walked in our room.He gave the thumbs up. He said the scan looked good. The brain looks fine. The eye shows still some soft tissue but it is still early. It could still be swollen from radiation. He said it isn't too much smaller than last scan but it hasn't gotten any larger. He said it may go down some and it may stay as scar tissue. Grimley doesn't think that Austin is in "pain" from something just has the "blahs" from transplant. Some kids experience flu like symptoms. He said he isn't having symptoms from his flu, he just still has the virus in his system that he can pass to someone else. We gave him some Tylenol to see if that helps instead of giving him some heavy duty pain meds. Morphine just makes him sleep all day. So as long as no one is messing with him he is fine. If anyone tries to touch him, even me, he screams. Doesn't want to eat yet and only drinks a little bit. They have backed down on his fluids and we will stay another night and see how he is tomorrow. It may just be something we have to put up with for awhile as there isn't really anything they can do. He doesn't think it is graft vs. host as he would have diarreah and he is constipated right now. Grimley feels that less is more for Austin right now. Meaning he doesn't want to do anything different and just let Austin ride it out. He feels the more he does could disturb the grafting that is already going on. He is asleep right now, so I am hoping when he awakes he will feel like eating some and drinking.

Elizabeth

Sorry Austin. We have to stay at the hospital.....

2007-03-27T21:06:00.000-05:00

Sorry for a late post today but I had to wait for Jason to bring my computer to me. Yes, we are at Methodist Hospital. Austin got admitted today. Not due to fever. We had another bad night of no sleep. It seems Austin is in pain. Today in clinic they were going to have us stay all day for fluids as Austin isn't peeing. They gave almost three bags of fluids and also blood and he still didn't pee. We put a bag on him for a urine sample and I kept checking and checking and no pee in the bag. Finally about almost 5 he finally went. It seems like it hurts him to pee and he must have been dehydrated so they decided to admit him. That way they can control his pain and get him hydrated again. They have run a bunch of test as they are not sure what is going on with him. Grimley also decided to have a CT scan done on Austin's head. He said it isn't that he thinks anything is going on there put for his own piece of mind so he can sleep at night. We said "us too!!!". They wanted to do the CT scan tonight but there isn't any anesthesiologist here tonight and Austin won't sit still so they have scheduled it tomorrow morning. I think it is at 10am. Hopefully this will be short stay but we will see. Well I will update again tomorrow. Hopefully Austin and I can get a good nights sleep.

Elizabeth

Busy Monday....

2007-03-26T18:03:00.000-05:00

Well the fever stayed down!! We made it to clinic with a low grade fever of 99.8. It came down all the way to 97.5 today. Today his red blood count was at 5 and platelets were at 7. So he needed both blood and platelets. Since his blood count was so low and they only give half of a unit at a time he will need to go tomorrow for another blood transfusion. We haven't seen a rash on him since Friday and we were wondering if that was a bad thing or not. Grimley said that with a blood count of 5 there will be no rash and a lot of times the rash will go away and come back again. It doesn't mean that the transplant is not working. There are plenty of other signs,like his feet are sensitive, to tell him that things are going in the right direction. They did take another sample from Austin's nose to check to see if he still has the flu. Grimley also had them take a blood sample to send out for his trial to see if he is grafting yet. It can take up to about a week. He said possibly we will hear back on Friday but maybe not until Monday. We didn't get much sleep last night with Austin tossing and turning, checking for fever, getting Austin to drink, and Austin being in pain. He finally fell into a deep sleep about 6:00 am and I had to get him up at 7:30. Poor guy. On the way to clinic he fell asleep. During clinic he couldn't get comfortable and acted like he was in pain so they gave him a small amount of morphine to take the edge off. He finally then got comfortable and has pretty much been asleep since then. We hit the bad rain on the way home and got home about 5:15. He is now asleep on the couch. He hasn't drank or eaten much today so I am hoping he wakes up hungry and thirsty. We had back to clinic tomorrow and we might have to borrow Pop's boat to get there if this rain doesn't stop. Austin would enjoy that. LOL

Elizabeth

Fever watch...

2007-03-25T21:34:00.000-05:00

Well Austin is still very punky. His feet hurt. He doesn't really play at all. He lays on the couch and watches movies. He gets down and walks around only a little bit. He gets up to go to the kitchen for me to get him waffels, pancakes and soft pretzels. That's what he has been eating. Tonight for dinner we had pizza and he ate a whole slice. Way to go Austin. But a fever sprung on tonight. He has been running low grade fevers of the highest 99.5 but tonight it went up to 100.9. I called the hospital and they called the on call doctor Dr. Wall. They said since he has an appointment tomorrow to go ahead and watch it. If he gets higher or something changes like vomiting, breathring trouble, ect to give them a call back. So far it hasn't changed and he is in bed. I have to give him meds at 9:45 and will check his temp again. He is so good when I go in there he just lifts his arm for me to put the thermomater under his arm.

He just woke up. I took his temp. Down to 99. Thank you lord. Keep the prayers going. I put a post on Austin's myspace page about his fever and got tons of messages already on people praying and the fever is coming down. Now if it would just stay down. We will see what tomorrow brings. Have a great Monday!

Elizabeth

Wake up Austin.......

2007-03-23T19:20:00.000-05:00

Well sorry for the delay in the blogs. How this week went by so fast. We had Thursday off from clinic and it was nice. Austin went to bed at 7pm Wednesday night and didn't get up but once in the night to get a drink. Then he slept to 8:30 the next morning. Can you believe that? Austin slept that long? He had a three hour nap on Wednesday too. So yeah, Wake up Austin. LOL Wednesday he had a good day. He is getting a little bored. If they weather would clear up and stay dry then he could go outside and play. I asked him yesterday if he wanted to go for a ride in the car and go "bye,bye" and he picked up my purse and was at the door. I guess that was a yes.

Today is another story. He woke up with a temp of 99.4. He was punky all day. His feet hurt which is another side effect to the grafting and meds. Grimley said the older kids say there feet are "hot" and the little ones just stop walking. Austin hasn't stopped walking yet just slowly and carefully. They want him to work on his drinking and not worry about his eating so much. He has maintained his weight well so he has a little to give. Grimley gave him an A+ on his rash. He likes what he sees. As long as it comes and goes like it does where are good. If it stays we will have to put him on oral steroids which he doesn't want to do. He came home and took a long nap. When he woke up he was so hot so I took his temp. It was a 100. I was ready to pack the bags thinking we will be at the hospital tonight. A few minutes later I felt him and he was nice and cool. I couldn't believe it so I took his temp. It was 98.2, couldn't believe it came down so fast. I am just watching it closely as to we have to call if gets to 100.5 or higher. Please pray it doesn't get any higher. There is no room on the floor and he has to have a room by himself because he has a touch of the flu. Yes test came back today he still has the flu. Poor Austin. It is weird that one day he is fine and the next he feels like crap. So tonight lots and lots of fluids and rest. We are off from clinic for the weekend and go back on Monday. He got some fluids today in clinic so I am sure that helped him out today. Well I better go Austin wants to sit in my lap to watch Over the Hedge.

Elizabeth

Sleepy Austin....

2007-03-20T19:07:00.000-05:00

Today was a long day I clinic but I can't complain, we could be stuck in the hospital. I would rather go to clinic every for all day then be stuck in the hospital. Once again Austin did not have a good night. I finally gave up about 2:30 this morning and gave him tylenol. He must be in pain is what I am thinking. After about thirty minutes of tossing and turning he finally driffted off to sleep and stayed asleep. He then didn't want to get up this morning but I don't blame him. We got to clinic where Austin didn't even want to watch Wiggles he just wanted to sleep. Austin's counts came back with red blood cells at 11.1. We thought wow we don't need blood. He isn't drinking much and so they hydrated him with fluids. He is still very fussy and doesn't really want to be messed with. Dr. Grimley came by for his rounds and said he thought that the counts were off and that he needed blood. So they ordered blood but there was a shortage so we had to wait. They re did the CBC and it did come back that his red cells were at 6.5, so yes he indeed needed blood. They gave him benadryl and a steroid before the transfusion so he wouldn't have reaction. Right after the Delores started the trasfusion Austin became really fussy and couldn't get comfortabel so she called Dr. Grimley in. He said to go ahead and give him some morphine. So after that Austin passed out. About almost half way through the transfusion Austin broke out into a rash. OH NO! They all rushed in tryig to make a decision but he started to fade away. They were actually excited because all and all it is the NEW cells making the rash. He is grafting and not a reactoin to the blood. Yeah Austin. He slept the whole time. We are on watch for a rash that appears really fast and doesn't go away. Daryl the nurse practioneer said they don't usually get to see this because this usually happens in the bone marrow transplant kids and at this point they are still in the hospital. So this is all an experience for them. He said it is such a miracle. Boy it is. We didn't finish up until about 5:15 and then we stopped to get Jason a card because it is his birthday today. We wasted some time so we wouldn't have to sit in traffic. So we are home and enjoying it.

Elizabeth

Punky Austin....

2007-03-19T18:31:00.000-05:00

There is some kind of good news and some bad news. Austin is feeling bad again. He didn't have a good night sleep. We went to clinic today and was just so not him. With all of the symptoms of grafting. That is the some what good news. Which is a good thing but they don't feel good. So now we will go to clinic everyday for a careful watch. He got fluids and will probably need blood tomorrow and platelets later in the week. If he gets a high fever of course he will have to go to the hospital. The floor is still full so they don't want to have to do that. The bad news though is they swabbed his nose the other day and the test as finally come back POSITIVE!! Oh no!!! He feels probably bad because he might have a touch of the flu. I hate this. Man on man this stinks. They will reswabb his nose tomorrow and we will see. Please pray this is an error and he really doesn't have the flu. He doesn't need this right now. I feel so bad for him as he feels so sick. Thanks for the prayers.

Elizabeth

Our Austin is coming back...

2007-03-18T22:28:00.000-05:00

Austin after his bath tonight in his teddy bear towel

Austin is feeling better. Eating some and drinking more. He doesn't want anything to do with milk right now. He is drinking Dr. Pepper (caffeine free). Only thing that taste good to him. He hasn't had any more poopy diapers and finally had some good pee diapers. He also ran a little bit of a low grade fever. It never got any higher then 99.1. Sorry for so much information. He took a long late nap today so He is still up but he is in his bed watching Diego. Grandmama and Pa brought pizza over for dinner and Austin enjoyed that. He enjoyed their visit and cried and started to wave bye when they told him they had to leave. He stopped crying and watched them leave waving goodbye. His new thing to say now is "hot" waving the steam away. He is so silly. We have clinic tomorrow at 9. We will see if it needs to be a long day or not. Well I better got check on Austin and head to bed. Have a great week.

Elizabeth

Waiting on a call back......

2007-03-18T10:15:00.000-05:00

Well Austin woke up not vomiting and drank some milk. I gave him some 7up too but he only will drink that for me if I syringe it in his mouth. Go figure. His tummy seems to feel better BUT he started to have runny poopy diapers. I called the Transplant unit and we are just waiting for a call back.

We got our call back and they just want me to push him drinking and drinking. Said to go to the lactose free milk and stay away from cheese. They don't think it is graft vs. host disease yet, too early. So we will see how he goes. I guess tomorrow they could give him fluids in clinic if he isn't drinking enough. So my mission today is to keep him drinking. Wish me luck.

Elizabeth

St. Patrick's Day!!!

2007-03-17T22:28:00.000-05:00

Happy St. Patrick's Day! Sorry for posting this so late. It has been a non stop day. We are clinic today where Austin's shirt wasn't the only "green" thing on him. He was so sick to his stomach. I don't know what happened. He ate breakfast and drank his milk and was fine this morning. We got to clinic and were only there like thirty minutes and the threw up all over himself. He needed platelets of course. He still had some rash on him from yesterday. They gave him benadryl and tylenol as premeds since he reacted to blood products. I attempted to give him his premeds and he saw them and threw up all over me. It was a mess. So I waited after they gave him benadryl to give him any meds. He kept his meds all down and slept through just about all of the transfusion. He seemed car sick the whole way home but didn't throw up. He even attempted to eat. When we got home I got his bath ready. Before I could put him in the bath tub he threw up. Wasn't much though. I gave him some zofran and he hasn't really thrown up anymore. We are just now battling him drinking. I finally got him to eat again and drink a little but it isn't enough. If he doesn't pick up his drinking he will end up in the hospital for dehydration. So please say some prayers that this sickness will pass and he will be back eating and drinking again. I was told today he was already not drinking enough. We are at day 10 post transplant. We still have a ways to go and I am praying all is going to go well. We are off from clinic tomorrow. I will have to call them if he doesn't start to drink in the morning. So if your up late and your reading this please say a prayer!!

Elizabeth

What did the blood donor eat???

2007-03-16T17:45:00.000-05:00

It's Friday!!! Yeah!!! Austin has been feeling pretty well. A little sluggish but I believe from low red blood cell count. He has been a little better each day and still is drinking lots of milk. His eye is looking better but still bothers him some. Funny thing is it only really bothers him at clinic. Must be something in that room or what they use to clean. Today he need red blood cells like I thought. The transplant doctors don't premed like Dr. Patel does. They also don't give as much blood either. Patel gives Austin a while unit over usually four hours. Today they were giving him about half a unit of two hours. At about almost the end of his transfusion he broke out into a rash. For the first time ever Austin was having a reaction to blood products. The rash was getting worse. They stopped the transfusion and and gave him benadryl and a steroid. His mouth was on fire. He kept drinking his milk. Finally he fell asleep and slowly the rash would go away. Our nurse Delores had to fill out loads of paper work and had to take a blood sample from Austin to send to the blood bank. So probably for now on before blood products Austin should get premeds to keep him from reacting. It was funny what Daryl the nurse practitioner said, "did that donor it strawberries and your allergic to them?". It makes you wonder. Well we didn't get home until 5:30 and he is still a little out of it from the benadryl but seems to be fine to play with his toys. We go back tomorrow which we are pretty sure he needs platelets. His white cell count has dropped which we figured would happen. We are still praying for next week. The big week when we should see if the transplant worked. Please say a prayer that the new cells took and do the trick!!

Elizabeth

Eye for an eye...

2007-03-12T20:45:00.000-05:00

Hey all,

Austin had clinic today. It was a long day due to needing platelets. Austin's eye is giving him trouble as well. Dr. Grimley thinks it could be from radiation. It tears all the time and lately he has been rubbing it along with crying. They have me putting drops in it as it could be dry or something in it. His nose is running a lot lately too. I finally broke down tonight and gave him some benadryl. Hopefully that will help. Other then that everything looks good. He is going to start going to clinic Monday/Wednesday/Friday which is great. He is taking his meds well. The only trouble he gave me tonight was putting eye drops in. I would be mad too. His eye is worrying me but I am sure I might be just over worrying. He seems to be able to see but scares me when he rolls his eyes and makes weird faces like it hurts. I am watching him like a hawk. Well Austin wants me to play so I better go.

Elizabeth

Looking good...

2007-03-11T11:52:00.000-05:00

Hey everyone. Things are good. We are trying to get back on some kind of schedule even though Austin doesn't want to. He is doing well with his oral meds. One doesn't taste very good so I give that to him last and let him chase it with a drink. But he doesn't spit any of them out. I give him a nupogen shot everyday starting yesterday. They ordered prefilled syringes instead of a vile but the syringes have to much meds in it so I have to squirt most of it out. But it isn't too bad. We have been at clinic Friday and Saturday with today off. Everything looks good so far. We are enjoying being home and is the reason I haven't blogged in days. Austin keeps us busy. Wanting to play outside and go on walks since that is about the only places he can go.

Right now Jason just got home from a bike ride and walked in the door and Austin said as clear as can be "DADDY!" That is all I hear anymore is daddy. He is always looking for daddy. It is so cute. It makes Jason grin from ear to ear. We go back to clinic Monday. I am thinking he will need platelets soon. We will see. Hope everyone had a great weekend and a great week to come.

Elizabeth

Where is Austin, Where is Austin??

2007-03-08T17:34:00.000-06:00

Home he is. Home he is!!!! Yes Austin is home. What a great feeling. He is a little light on his feet but he is home. We didn't leave the hospital until 2:45. Between waiting on the nurse practitioner and prescriptions it took a long time. He was napping so it was fine. He is already running around playing with all of his toys and his dogs. When I put him in his car seat to go home, I couldn't believe how tall he was. His head was further up in the seat. He is such a big boy. We have a bunch of meds that I have to put on a schedule for myself to give Austin. It can be so confusing. He will start getting shots on Saturday. Some meds are twice a day. Some are once a day. Some have to be at a certain time. Others can be anytime. Some he can't have until after clinic. Some are for weekend only. Oh boy. All and All it is great to be home.

Elizabeth

Thank you Cord Blood Donor....

2007-03-07T13:57:00.000-06:00

Austin and his balloons. Thank you Aunt Amanda, Uncle Jerry, Dylan and Emily!!!

Austin eating Chick-fil-a after Transplant

Austin after radiation yesterday

Well Austin's transplant is complete. He did very well. He feel asleep during the middle of it. Well one of the premeds was benadryl so that made him sleepy. While he was asleep they brought in two wrapped presents. When he awoke Austin and his nurse Carlos opened them together. Austin said "WOW". He opened them very well. No hesitation. There is still talk of us going home tomorrow as long as no fever, he takes his meds, eats, drinks and of course Mommy has to give him shots. But I don't mind at all. Kind of use to it. One day I was able to give him his shot by myself. I was so proud of myself. Lately he hasn't been crying when I give him the shot. Man I am good. LOL. He is watching wiggles and eating Chick-fil-a.

Elizabeth

Today is the Big day, Transplant Day.....

2007-03-07T09:04:00.000-06:00

I just ran into Dr. Grimley in the hall way. He had a blue ice chest in hand. He said I am on my way to go get it!!! Funny I thought. Just never thought it would come in a blue ice chest. Just thought I would share that funny with you. Austin is wild this morning. We just took his toys away because he is throwing them. He has been singing and dancing. He loves to roll around in the bed. Well I am off to get ready for 10:00 A.M.!!!!!

Elizabeth

Pictures

2007-03-06T19:22:00.000-06:00

Austin's last eating out at a resturant "Do you like my boots?"

Last day at Dr. Patel's office

Austin stealing supplies at Dr. Patel's office

Austin just arrived at the hospital and waiting for hook up

Austin in his Wiggles shirt

Austin eating Cheetoes

Radiation came to end today.....

2007-03-06T18:34:00.000-06:00

Well poor little Austin had to wait for his TBI today. It wasn't scheduled until 2:00 PM. He got up early this morning so was able to get four ounces of milk down before cut off. He did well with his radiation. It was sad to say good bye but nice to know it is over. Dr. Eng wants to follow up with Austin for a while so we will get to go visit, and hopefully only visit. He is still very worried about his height and says he probably will be short. This is coming from a man that is very short and says he will be short just like him. The nurse and laughed when Dr. Eng walked away and said I don't think so. So the nurse told him to grow a few feet in the next few months and come back and show Dr. Eng. LOL I took the coming back for follow up as a good thing. More like research to see how tall he grows and how his bones do. Before it was one follow up appointment and that is all. Two, I like the fact I will have still on board of the team of doctors to watch to make sure this nasty thing doesn't come back. He did very well in his last ambulance ride. Rode all by himself in the stretcher to and from CTRC. He directed the way back to the room for the EMT's and then when he saw his daddy in his room he pointed and told them "Daddy". So they said "hi daddy". Was so very cute. He did throw up when we got back but I am sure it was from the anesthesia and the backwards ride in the ambulance. Right after we cleaned him up he starting eating and has been playing and watching video's since.

Transplant is tomorrow at 10 am. So if we could pray at 10 am that the cells "cure" Austin would be great. I am thinking we will be in this room so we are just going to let the grandparents come up. So the big day will be here and then we should HOPEFULLY go home Thursday. Yippee!!!! I am keeping my hopes up!!!

Elizabeth

2007-03-05T14:28:00.000-06:00

Austin's weekend went well. He started his ATG (rabbit serum) and to a few little red spots and a little bit of a fever. But after a few doses of tylenol the fever was gone. It didn't get higher then 100.1. Today is day two and so far no fever and no new rashes. The steroids are kicking in. He is getting steroids around the clock. He is acting very aggressive and loves to scream at the top of his lungs. It is already 2:30 and no nap yet. He even has had a dose of benadryl and still isn't asleep. He is watching Lady and the Tramp so soon he should drift off to sleep. I may just shut my eyes with him. The floor is still full so it looks like the roommates will have their transplant together on the same day. We are still on schedule. We will have ATG today and tomorrow. He also goes to CTRC tomorrow for TBI (total body irradiation). AMR (ambulance service) picks us up at 1:15 tomorrow. We talked to Grimley this morning and how the nurse suggested to do the ATG early in the morning tomorrow. He agreed because he like to do transplant at least 24 hours after the last does of ATG. We are still looking at going home on Thursday IF he is still eating and drinking (which he is) and no fever (besides the fever he gets with the ATG. BUT..... he may end up right back in the hospital, just depends. But like Dr. Grimley says it would be a nice break to get home at least and we will be in clinic probably on Friday. Grimley says Austin's counts are showing things are working. And that is after only one dose of ATG. Austin will be NPO after 8 am tomorrow. So shall be an interesting day. Later I will post a bunch of pictures.

Elizabeth

Austin hanging in there.....

2007-03-02T21:26:00.000-06:00

Austin is still doing well. He starts his bad stuff on Sunday. It is a rabbit serum that can cause fevers and chills, to be expected. He is still eating and drinking very well. Sometimes it is a battle, but once he gets started eating then he does pretty well. We still have a roommate and the situation looks like it will stay that way. We will see. They say the 4th floor is full. No beds at the inn. Austin is sleeping right now. He got up at 7:35 this morning and took a good nap before lunch. He fell asleep around 9:15 tonight. We miss home and our dogs. We can't wait until we are out of here but each day goes by fast and before you know it we will be home and I hope we never have to be admitted again. I am praying to God that this is the answer to "cure" Austin's cancer. As there is no cure for Neuroblastoma, I feel the only reason is because there is not just "one" treatment that works and keeps it away on every child. Every child responds to each treatment differently. We are still waiting on that one treatment that stops this beast entirely. Please God help the researchers discover this treatment during the study of Christi Thomas' cell line. I do believe in miracles and know there is hope of finding a CURE!!!

Elizabeth

Chemo started.....

2007-03-01T10:19:00.000-06:00

Austin went to bed around 10pm last night. We started around 9:30. We had to wait on his night time oral meds. He didn't get up until a little after 9 this morning and really didn't wake through the night. So he is pretty rested for his chemo today. He got up and ate pancakes and tried some bacon. He had a few bites of his bananas. Right now it is 10:19 so the Wiggles are on. He watched Lady and the Tramp for the first time last night and he kept calling the dogs. I think he misses his dogs already. We are still trying to get use to having a roommate. His roommate is a boy a little bit older then him maybe a few months older. They are very curious about each other. It is very cute. Some times when the little boy cries then Austin does. He is not use to have another child around. The poor little boy's pump kept going off last night so they had to mess with his lines which messed with his sleep. Other then that things are fine. Trying to keep Austin busy and on some what of a schedule. We will see how it goes. I did find out that he is having cytoxin which is the same chemo he has had. So we kind of know what to expect. I am wondering if he will do the neutropenic/fever thing. He has been doing cytoxin with topotecan so I don't know if it is the combo that does it or what. So we shall see.

Elizabeth

We are here.....

2007-02-28T19:10:00.000-06:00

We made it to Methodist at 1:30 this afternoon. We have been just hanging out. We are on the oncology side for now. They are full at the hospital all over. We have a roommate right now. The little boy was sleeping this afternoon and Austin threw a two year old fit and woke him up. He screamed while they accessed him but the real reason was he was so tired from throwing his fit. He did the same thing at CTRC. When he doesn't get what he wants he just lets you know. At CTRC he wanted to go back to the vault and he wasn't very happy he was in a different room today. They did the simulation first. He even woke up made. But as soon as he got some food in his belly he was a happy boy. Same thing tonight. He is eating right now. He was eating and falling asleep. Now he is wide awake eating watching Barney. His eye started to look bad under the eye. We don't know why. When he was laying in the bed with me Grimley thought he should start him on antibiotics but when he got down on the floor to play he said it looked fine and we will just watched it. It kind of looks like a black but then it looks like almost a rash or he rubbed it on something. Who knows with Austin. We start chemo tomorrow. Cytoxin. We had this chemo with Patel so we are very familiar with it. I was going to post picture but forgot to bring the USB cord so I will have to get jason to bring it up tomorrow.

Funny: We are having a deja vu today. We are in the same room when Austin got an infection in his old port and had to have it taken out. That was when we were kicked off the fourth floor because the roommates mother didn't want a roommate for her son. It is still all fresh in my mind. Haha. Oh well.

Elizabeth

Getting ready.....

2007-02-28T09:02:00.001-06:00

Sorry for the delay in posts. Radiation is going well. Austin's eye has healed very well. Today is the last day of radiation for his leg and arm. We still have to do total body radiation next week (the day before transplant). After radiation today we will check in for our stay at Methodist Children's Hospital. Austin should start chemo tomorrow. We had a good weekend and last night he got to go to dinner in a restaurant for one last time before our long haul. He enjoyed every minute of it. So did I. I couldn't tell you when the last time I ate at restaurant. Right now I am finishing all of our packing and checking my list to see if we have everything and then we will head out to CTRC for radiation. Austin is getting dressed and is ready to get the show on the road. Yesterday the anesthesiologist was an hour late. We needed to go to the clinic to get Austin's mouth swabbed so they let us go ahead and leave CTRC and go to Methodist and come back. When we got back the doctor was there. Perfect timing. I will post some pictures later and let you know things after we settle in.

Elizabeth

TGIF

2007-02-23T20:11:00.000-06:00

Well we made it through the day. We kept our 9 am Patel appointment even though radiation was at 1. Glad we did. Austin needed platelets. We got finished with platelets just in time. We were suppose to be at CTRC at 12:45 but didn't get there until 1. Well we usually have to wait but this time they had to wait on us. (not long though). Now that the eye is finish it only took 30 minutes for his arm and leg. So we were out of there fast. Monday we have Patel's office at 9:15 where they will access him and check his counts. Then we head to CTRC at 10:30 for radiation. After radiation we go to the clinic at Methodist for pre transplant labs. So another busy day with things moving fast, but I think it is better that way. Before we know it this will be all over and behind us and watch Austin grow into a strong young man.

Elizabeth

Do not touch the emergency button

2007-02-22T23:44:00.000-06:00

Kylie an Austin in August 2006, Happy Birthday Kylie!!!

Austin and Kylie in August 2006, today she turns two!!!

Today was the final chapter of radiation for Austin's eye. So far all looks good except for the poor kids eye lid. It looks like someone beat him up. He doesn't complain about it though. Today they gave me special cream to put on all areas that get radiation. So far his counts look good. Platelets on Wednesday were 58 so we possibly will need transfusion tomorrow. We are expecting it so we left a big gap between Patel's visit and radiation tomorrow. It will be hard with him being NPO because when he wakes up from the benadryl nap he is always very thirsty. So we are praying for a good day tomorrow. We will do what we need to do. Radiation should move faster now that we only have to do the arm and the leg and there will be no more mask to put on. YEAH!! Everything is still on schedule so far.

Ok, the emergency button. Here is the story. There is a red lighted button that says Emergency on the table where Austin gets radiation. A few days ago the tech told us that when the button is pushed it shuts everything down and delays everything for like 11 minutes. Well guess who pushed the button today? He was too fast for me to catch him before he did it. Luckily we were waiting on the anaesthesiologist so we had time. Oh boy would he have been in trouble if we didn't have time. Silly boy.

Well we go to Patel's tomorrow at 9 and then big gap in case platelets are needed and don't have to be over at CTRC until 12:45. Hope everyone has a great weekend.

HAPPY BIRTHDAY KYLIE!!!!!! She turned two today.

Elizabeth

"it's in God's hands"

2007-02-20T15:17:00.000-06:00

"Here I am!!"

Look who I found in the laundry

Austin on his Trike
Monday update........ Radiation went well. They were 30 min behind. His eye is pretty raw on the lid. We think it is some radiation and some tape. But other then that he is doing fine.

Today...... My day started with traffic. Yuck. But what really bothered me today while we were sitting in traffic is I happened to look at this SUV where there was a little girl (when I mean little girl she is younger then Austin) in her car seat that was turned rear facing (so she is under a year old) and it looked as she was not strapped in. She was basically sitting up looking out the window. WOW. Her mom was driving while talking on the phone. I wanted to honk at her so bad to tell her to buckle her child in. Here Austin is fighting cancer and there is nothing I could of down to "prevent" it and this lady doesn't have her child strapped in the car seat properly to "prevent" injuries to her child from a car accident. You never know when a car accident will occur. Even if your careful, there are other people out there that are not.

After the traffic was more waiting on the anesthesiologist. An hour late. Then she shows up and we see her in the hallway on the phone. I don't get it? Do you figure your late so it doesn't matter? Poor Austin was so bored waiting. We walked the hall, played outside near the fountain, played in the play room and then he finally came and sat in the waiting room. So an hour later they finally started radiation. After treatment he woke up pretty quick. His eye looks horrible. It is so reddish purple. It seems to bother him today. So they suggested to give him some Tylenol and they might have Dr. Eng look at him tomorrow. He only has two more treatments left to the eye. We go tomorrow to Patel's at 11 am and CTRC 12:30. He might need platelets. If not tomorrow then Friday. So we might have to go to the clinic after CTRC. We will see.

It amazes me of how many people at CTRC (patients mostly) that stop me and ask about Austin. They always ask for his name to pray for him. I always feel that people are attracted to Austin. Yeah maybe it is his bald head or maybe it is mask but at least at CTRC they know what he is going through and understand what the mask means. When we go to Patel's office we sometimes run into kids and they ask their parents what Austin has on his face and why. Their parents usually scramble trying to give them an answer. My favorite answer that a mother gave when her daughter asked why Austin was wearing his mask she told her "because he is special". The daughter never said anymore. I thought that was awesome that she came up with that. Today we were going up the ramp at CTRC and this older lady said "what a brave little boy. We will pray for him". She knows nothing about him but filled our hearts that she would pray for him. While we where visiting the fountain outside a young lady came up to me with what looked like a shaved head (or her hair growing back from chemo) ask me with a smile "what is he fighting?". You could tell she was a fighter herself. I told her Austin's story. I keep thinking about what she told me. She had asked me what his prognosis was and said "even though that doesn't matter because it's in God's hands." She said she has a three year old herself. As she was leaving, Austin was a few feet away and she chanted out to him "Fight Austin Fight". Wow. I am just so floored how these people open up their hearts and prayers. One of the nurses at CTRC told me that everyone (patients) gets to know everyone around there. He said when they see a child like Austin (they don't have to many children Austin's age)it is hard for them to imagine that this child has to go through what they have to. I explained to the lady at the fountain that children handle treatment different then adults. she said "praise the lord". I told her he barley gets sick from chemo and she said "WOW". I just love to share Austin's story with people so they too can witness this miracle of life!!!

Elizabeth

Outdoor fun....

2007-02-17T20:42:00.000-06:00

My sweet Austin on his new slide (yes his eye is swollen)

These are just some of Austin's markins for radiation

Yes we know the front door is pink, Oh well.

Austin at his very own sink

Austin in his new playhouse

Sorry for posting so late. I started to post Friday but never finished it so here is the update for Friday and today......

Friday...... We were to have radiation at 8 am but they called me Thursday at 5:30 pm to say it was pushed to 9:30 am. Well the doctor was an hour late so it was 10:30 before we even got started. I wouldn't be so upset if we didn't have other appointments to follow. Austin had to get his blood count check at Patel's and we need to go to clinic to sign consent forms for transplant. So I had to call and let them know we were way behind. Austin is doing very well with his radiation. The last two days the anesthesiologist sang him to sleep (well as she was pushing the white magic juice). She has a beautiful singing voice. He has enjoyed going to CTRC. We don't know what it is but he loves to go into the vault. This time since we were waiting so much they just let him play in there. He loves the big machine. After radiation we went to to the clinic first. When I had called Patel's office they said they were running behind because Patel was gone so Patsy was by herself. So we signed out consent forms for transplant have got a schedule. Our last day of radiation will be Feb. 28th and after radiation we will head to the hospital where they will admit him. He will just get fluids this day. March 1st he will start his chemo. He will have chemo for five days. On March 6th he will go to CTRC for Total body irradiation (TBI). On March 7th will be his big day. Transplant Day!!!! So we are moving fast. But to me fast is good. I hope everything can go as planned. Traci the transplant coordinator is great and gives us a wonderful road map to follow. It helps me so much to see it visual as well as to hear it. After transplant he may come home pretty quick just depends on Austin. He will be isolated for at least 100 days out. So we are looking at end of April beginning of May when he can start to try and get some normal in his life. He will be allowed to play outside and go on walks as long as the weather permits and there are not alot of people outside. He must wear his sunscreen and hat to protect his sweet face and bald head.

Saturday...... As you can see from the pictures Austin has had a wonderful day outdoors. He got a new slide and house to play with outdoors. Nannie and Pop got a good deal on a playhouse at a resale shop. He loves it. Mommy and Daddy gave him his slide (an early birthday present). He took his nap around noon and after he was sound asleep I went and washed the patio off with antibacterial soap. Daddy set up the slide. When he woke up form his nap it was like Christmas. We told him to go look in the backyard and when he looked out the back door he said "WOW!!!!!" I could barley get his socks and shoes on and trying to put sunscreen on him was hard. It was so nice to watch him enjoy playing outside. He just smiled the whole time. We also went on a short walk down the street on his new canopy trike. I don't have a picture of him on it but I will take one tomorrow and post it. Nannie also found this trike at the resale shop and it is so neat. It is a tricycle that has a strap belt to keep him in his seat and a handle bar for the parent to push the child around. He has a canopy on top for shade. He loved to pretend he was riding it by himself.

Well Austin is ready for his bath so I will write some more tomorrow. He keeps me busy so I don't get on the computer that much anymore. But I enjoy every second with him.

PS warning on the pictures. Austin eye is swollen and dark from the radiation. Just didn't want any freaking out.
Elizabeth

Happy Valentine's day!!!!!

2007-02-14T17:00:00.000-06:00

Austin and Mommy in the vault at CTRC getting ready for sedation

Austin and sweet Nurse Delores

Austin saying "I love you" to everyone

What a wonderful day. Austin gave everyone smiles today with dressing up in his tuxedo. He had everyone talking about him. We first started off at Patel's office. Unfortunately we missed Dr. Patel but we left him a picture of Austin. His counts are coming up. Still low white count but they are slowly coming up. Then we headed over to the clinic, no not to get blood products but this time to surprise his favorite nurse Delores. She was working the 4th floor so they had to call her and tell her she needed to come to the clinic right then. She first told me them she was real busy but they told her she couldn't miss this. So she came. Austin was in a room playing on a slide. She came in and was shocked to see him in his tux. We then gave her roses with a teddy bear. She is so good to us and Austin truly loves her. He always feels comfortable with her. Then we headed over to CTRC. Where he once again had everyone talking about him and taking his pictures. It was so nice to see even the other patients smile. Austin can light up a room. He had a great day. Radiation went well and we are just moving along. We go back again tomorrow to CTRC at 10:15 am for 10:30 radiation. Hope every one has a great day like Austin did!!

Elizabeth

The Warrior

2007-02-14T00:32:00.000-06:00

Gazing in the mirror,
I see a warrior’s face.
Fully clothed in armor,
No fear and no disgrace.
A tear it never offers,
A smile it always gives,
No sadness does it show,
But what a life it lives.
Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.
Each day you see this person,
And think that they’re so brave,
Each day you see us laughing,
The tears are ours to save.
So when you see our armor,
And think we’re calm and mild,
Remember this one thing,
The warrior is a child.
– by Terra, age 16

(Take a careful look at the picture to see what Austin sees)

Radiation....

2007-02-13T22:33:00.000-06:00

Sorry that I haven't blogged sooner. We have been tired from the early monday morning radiation treatment. I will have to say it was nice getting it over with. Monday I was by myself with Austin. We went to CTRC at 7 am and then had a 9:15 with Patel. Of course as I expected, he needed platelets. So then we headed over the the clinic. We finally left the medical center by 2:30. What a long day but I enjoyed it. Austin has been wonderful to be around. Even though he has been NPO, he really has been in the best of moods. When he can eat and drink, he does and has just been playing, playing, playing.

Today's radiation went well. They started his arm and leg. That will take 11 more treatments and the eye is 14 treatments. We have done 7 of the eye treatments already. So the eye treatment will finish up first. So we are looking at about another two weeks of radiation. Then we will do scans and then move on to transplant. Tomorrow we have a 9 am with Patel and then 11 with radiation. So it won't be to bad tomorrow. We will be heading home early afternoon. Well I am getting tired and need to get some rest. I will try and post again tomorrow.

Elizabeth

No naps this weekend....

2007-02-11T20:30:00.000-06:00

We have had a very nice quiet weekend. Austin felt the need not to take a nap. Saturday he was so tired he couldn't keep his eyes open before dinner. When it came dinner time he woke up to eat. He wasn't going to miss out on any meals. He is eating and drinking really well. Must be time for another growth spurt. He wakes up at 4 or 5 am each morning for some milk and then goes back to sleep.Last night he went to bed at 9:45 and he and I both did not get up until 11:30 am. WOW. I guess we were tired. Catching up on sleep is nice. Nice not having some one wake you up every few hours for vitals.

Today he played all day with no nap of course, since he got up so late. Mommy went to run errands so he stayed home and played with daddy. He has been talking a lot. He decided to put his own movie on in his room and was in there by himself. I was working in the dinning room and could hear him say " oh no" over and over again. I ran in there to see what was wrong. He had a big smile on his face. He was repeating what the little girl was saying on the video. He is so silly. I took video of him on my camera of him saying eyes, nose and ears but it is so dark you can't really see it. We also found him in his room with all of his bibs around his neck as you can see from the picture. He was so good that when he took them off he put them back where they belong. I guess he is starting to listen to me for once. LOL I have him in bed right now trying to get him to go to sleep early. As we have an early morning. I need to leave the house no later then 6:15 am. Yikes that is early. I will have every thing set out tonight so I won't have to worry about it in the morning. I have a feeling he will need platelets or blood too. Shortly after we gave Austin his shot today he bruised bad. We will see. Well I just wanted to update from this weekend. I am praying tonight Austin's white count is up. Talk to ya'll tomorrow.

Elizabeth

Until next time Methodist.....

2007-02-09T17:22:00.000-06:00

YES WE ARE HOME!!!!! We got home about 4 pm. Radiation went well. We go back to CTRC Monday at 7:30. WOW, yes early. Where were the early appointments this week? LOL That is okay. So I am not sure how long we will be there for. They possibly will be adding his leg and arm then. They also talked about making a new mask as they feel his might be too tight. We are suppose to go to Patel's at 9:15 so if they are on time it should work out.So Monday will be an early morning but I would rather that for Austin's sake since he will be NPO. We plan on just hanging out relaxing this weekend. He still has no white count so he is on major isolation. He is just so glad to be home. Playing with ALL of his toys and running around with the dogs. I hope everyone has a wonderful weekend.

Elizabeth

Why does it pour when it rains?

2007-02-08T17:40:00.000-06:00

Austin being a big boy riding on the stretcher of the EMS

Silly little Austin

Dare Devil Austin

Austin and his smile

Sorry for no update yesterday. I had one of those days where you wish that the day would end right that minute. I didn't want to blog because some of the information I had I wasn't sure it was correct. So I wanted to wait.

Yesterday........ Austin was scheduled for 9:00 am radiation at CTRC. The ambulance dropped us off and asked if they should stay or leave. The nurse told them this treatment would be hours because they were also going to do a simulation to add treatment. So the ambulance left. One of the docs there came by to talk to me about his simulation. He told me that they were going to take a CT from the neck down to locate the SPOTS (first clue). He said they were going to probably make a cradle to get his arm and his LEG (second clue) in the same place every time. I said leg??? I knew about the arm but leg? He said yes and pulled out the report from the bone scan. Said there was a lesion under his left knee. I think I almost passed out right there. Austin was asleep and I couldn't stop thinking about it. I told Austin's nurse and we both had the red watery eyes, "like is this really happening". So when they got Austin into treatment I went and called Traci, to see if Dr. Grimley knew anything. She called back and said that he was out of town but she didn't think he knew about the leg, the arm yes, but not the leg, or at least he didn't tell her if he knew. I also put a call into Patsy to see if she could help me. I kept telling myself this guy has to be wrong. He has to be. My phone then lost power. I sat for FOUR long hours. We made it back and I talked to Austin's nurse on the floor. She said she had a call into Patel and would talk to him. After her conversation with Patel she said yes there is a lesion there and he thought I knew. PANIC!!!!!!!!! Radiation went well. Austin has all kinds of marks on him for treatment.

Today................... Bright and early Patel was here to do his rounds. Patel sat on the other bed next to Austin's and apologized up and down because he thought between all three doctors that it was discussed. I said no not the leg, the arm yes. He said that the leg is an OLD NON ACTIVE lesion just like the arm. He reminded me that they said that about the one on top of his head back in April. So yes thank god they are NON ACTIVE lesions. The only active one is the one behind his right eye. They want to radiate the arm and the leg to be safe. It makes sense and I am so glad that it is not a NEW one like I thought.

Radiation went well today again. They have been having trouble with one of the machines for the past few days causing delay. We left the hospital today at 11:45 and got back at 4:30. When Austin woke up from sedation he said "HI" and gave me a hug and blew me a kiss. We got back in the room and they came to hook him up. He was not a happy camper as he wanted to run around the room and play. He was sitting in the bed and the nurse was trying to hook him up (it is a new nurse for us) and he told her "GO AWAY". It was plain as day. I didn't say anything and the nurse said well that came out clear. So yes she did hear it too. Oops. He is now getting platelets and got the good old benadryl. So nite nite to Austin for a little bit (I think). He is still kind of awake watching a movie but is very quite with heavy eyes.

Day two of radiation

2007-02-06T19:49:00.000-06:00

Today was a long day for Austin. We didn't have radiation until 2pm, so we had to entertain him, to keep his mind off of food and milk, all day until it was time to go. Austin took a little bit of nap, not much, before we went. They took him back at 2:30. The ems ride is different. I feel so weird riding on the stretcher with him, but it keeps him from screaming. Austin was finished with radiation and they brought him to an isolated room where I was waiting. They have been so nice to us. My mom bought him a hamburger, eariler, to eat after radiation so I offered it to him. He only eats the bun. He ate all of it and still wanted more. He threw a fit when he found out there was no more bun. The nurses at CTRC were running around trying to find things for him to eat. He really wanted to walk around some so we put his mask back on and let him walk around, however he then started to fuss. The EMS was taking so long to come and pick us up. There was some sort of a delay. Finally after many of Austin's tantrums he finally grabbed his blanket and asked me to hold him. He was so tired. By then the EMS came and we were off back to the hospital. He never did take a nap. When we got back I allowed him play in the room since he wasn't hooked up to any cords. He played and played. The next thing I knew an hour had went by. They never came in to hook him up. I started to think they probably don't even know that we are back. LOL. Finally a nurse came in and said your back, how long have you been back. I told her an hour and she couldn't believe it so, yes, they didn't even know we were back. She hooked him back up and he wasn't very happy at all. All he wanted to do was play with his balloon that his Nannie bought him. Pop came by this evening to give us dinner. He had a meeting not to far from us so it was a nice treat to see him. Gave Daddy a break. Pop played with Austin and his balloon and seemed to have a good time. When it was time for Pop to leave he gave him a hug and blew him lots of kisses. Was so very sweet. He only ate a little bit of dinner tonight, but he did eat that bun kind of late. He is so tired that he is starting to go to sleep now. He is watching Charlie Brown (I say he looks like Charlie Brown). His eyes are so heavy I am sure he will be asleep soon.

We go to CTRC tomorrow for an 8:30 am appointment. Thank goodness it is in the morning. Well I will update tomorrow.

Elizabeth

Austin's first EMS ride......

2007-02-05T13:44:00.000-06:00

Today was Austin's first radiation treatment. He was NPO at midnight. He woke up very fussy but to be expected. His ride was waiting on him. They let me sit on the stretcher with him and then strapped us down. Boy what we go through for our kids! LOL So he didn't fuss much since I was sitting with him. We got to CTRC at 8:30 this morning. We had to wait for awhile. They didn't take him back until 9:30. I was paranoid sitting there waiting with people coughing. Austin was wearing his mask but still. When they took us down to get in the ambulance we had to walk through the children's ER. I was so scared. I held my breath. I am thinking of asking for a mask for myself for our next trip.

Radiation went well. They are doing Tomathearpy (the same machine that he did his radiation on last time). Radiation to the arm has been added to the plan but not sure when they will start on it yet. They have to do the simulation for that. Probably make a cradle for his arm so it is in the same position every time. He was excited to be out of the hospital for a little while. He got to get on the floor (in a isolated room still with his mask on) and play with some toys. We got back to the hospital and they started his platelet transfusion. His platelets are dropping big time. His white count is still 0.2 and ANC is not registering. He had a better night last night and is eating and drinking much better. I will update later on as well.

Elizabeth

Fever, Fever go away and don't come back another day!!!!

2007-02-03T21:03:00.000-06:00

Austin is still running fever. As soon as the Tylenol his its six hours he starts to creep back up. He isn't eating much and is drinking okay. He has had lots of gas and I wonder if his tummy is upset some. He is laying in bed right now watching the Wiggles. He is fussing on and off. We just gave him Tylenol so hopefully he will be asleep soon. He is doing that jerking thing in his sleep again that is waking him up. I know he got a steroid today and I wonder if it is that doing it.

We finally got up this afternoon and played. Austin and I read Wiggle books and colored in Wiggle coloring book too. We played Thomas the Train and Bob the Builder. We have watched Over the Hedge three times today. It is time for Austin to get hooked on another movie. It is a very cute movie though and beats watching Wiggles all the time.

I went to go get Austin some food this evening and Jason said Patel stopped by to see Austin. He told Jason that there have been over 130 kids that have visited the ER with stomach issues (bugs). Man it made my stomach hurt hearing that. So we are being very careful here. I brought Lysol spray and wipes and will clean many times a day to be on the safe side. Just in case some employee or some one brings the bug from the bottom floor up. Well I will update again tomorrow. Austin is real fussy right now so I am going to go lay with him. I can here him tooting so I know that is some of his problem.

Elizabeth

Fever strikes again...

2007-02-03T09:40:00.000-06:00

Yes as I expected, Austin spiked a fever early this morning. I called Patel at 6:45 am to let him know his fever spiked to 101.1. He said it was time to go. So we got here at Methodist around 8 am. He is finally asleep. They gave him some fluids and Tylenol and he finally got comfortable. We are in a semi-private room. We don't not have a roommate right now but you never know. I heard one of the nurses say that all the rooms are full. So there is a high chance of a roommate later. I talked to the nurse about his ambulance ride he will have to CTRC this week. I don't think he is going to be happy. They will have to strap him down to a stretcher. She said they do it when they come to get him from the room. So with him being strapped down and NPO he will scream his head off the whole way. This should interesting.

Well I will update later to let you know anything I find out.

Elizabeth

Waiting Patiently

2007-02-02T16:23:00.001-06:00

Sorry for not updating yesterday. I just totally forgot to. Austin went for his follow up with Dr. Dowski and all is well. It was a large exam room and Austin thought it was cool going to a "different" office. So he ran around the room. Dr. Dowski came into the room and sat on the floor to Austin's level. Made friends with him and then asked to see his "boo boo". Austin pointed to his side and Dr. Dowski said yes I want to see your "boo boo". So Austin let him look at it. He said it is healing fine. Told us now all is done on their part and that him and his team would be there for support. He asked where we were in treatment and wished us the best of luck and we were on our way. It was a nice change of scenery.

Well this morning Austin woke up at 3:30 am HOT!!! Yes fever strikes. It didn't get higher then 100 so I didn't call. He plays with us. It goes up and then down and then back up. We went for counts thinking too he would get admitted. Austin's counts sucked today. White count was lower then yesterday and ANC isn't registering. Platelets went from 117 to 47!!!! So he needed a platelet transfusion. Patsy didn't want to send him over to the clinic as they were full. She thought the best thing to do was to stick around and wait for the fever to spike and then get admitted and get platelets in the hospital. Patel came in and changed things. He decided to go ahead and give the 4 th floor orders for admittance and to send Austin to the clinic for platelets. They said that they would watch his fever over at the clinic and if it spiked then for us to go to the 4th floor after transfusion. Tylenol is one of the premeds Patel gives to his patients for transfusion. Since they were watching his fever, I asked the nurse then should we not give him Tylenol? If we give him Tylenol we will never know if it spikes here. So said yes let me call Patel. He said no Tylenol. So Austin got platelets and took a long nap. A well needed nap since we were up at 3:30 this morning. His temp went to 99.2 to 99.8, to 97.8 all in Patel's office. When we were at clinic it ranged from 99.5 to 97.1. When platelets were at the end his nurse called over to the office to see what Patel wanted us to do. He said give fluids for and hour and if temp spiked send them over to the "big house". If they don't then send them home. Well we are at home. As of right now he hasn't spiked. His forehead is nice and cool. So we will wait and see.

CTRC called while we were at clinic. Radiation will start Monday at 9am. Patel has already put in Austin's orders if he gets admitted that he will need transportation to CTRC. Radiation wills still go on no matter where we are.

So the car is packed and ready to go if we need to. We are laying way LOW until we are out of the woods which will be some time. Usually at this point Austin's body takes a while to produce white cells.

Hope everyone has a nice weekend. I will update if we get admitted.

Elizabeth

"Crossing t's and dotting i's"

2007-01-31T16:40:00.000-06:00

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...

2007-01-29T18:10:00.000-06:00

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...

2007-01-25T21:20:00.000-06:00

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.....

2007-01-24T16:40:00.000-06:00

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...

2007-01-23T22:35:00.000-06:00

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???"

2007-01-22T17:46:00.000-06:00

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"

2007-01-19T12:48:00.000-06:00

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"...

2007-01-15T23:21:00.000-06:00

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....

2007-01-15T17:19:00.000-06:00

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....

2007-01-15T09:51:00.000-06:00

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...

2007-01-14T11:34:00.000-06:00

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....

2007-01-13T12:11:00.000-06:00

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

2007-01-12T23:39:00.000-06:00

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

2007-01-12T12:57:00.000-06:00

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...

2007-01-11T21:02:00.000-06:00

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....

2007-01-11T10:19:00.000-06:00

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....

2007-01-10T22:49:00.000-06:00

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..

2007-01-10T19:27:00.000-06:00

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!!!

2007-01-10T15:08:00.000-06:00

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.....

2007-01-10T14:52:00.000-06:00

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