8.12.2008

Written August 23, 2008 

 August 12th

Day 7

Hannah ate more for breakfast today than she has ever ate at one meal. She had two jars of baby food, 1/2 apple juice, 1/2 strawberry yogurt, and 16 oz. breast milk. WOW! What a big eater we have. She has ate great all day and has had a lot of dirty diapers to prove it.
The oncologist came in again today. He told us that they received another pathology report. The report stated that Hannah's tumor is a fast spreading malignant tumor but they are not sure what kind of tumor. (How they get that after yesterdays report, I am uncertain.) He says we are still going on with the surgery on Friday to remove the tumor so we can send it off to as many pathologist has possible. This will help us figure out what it is and how to treat it and Hannah.
We feel like we are riding a roller coaster every day. I am just ready for the surgery to take place and for Hannah to be OK.
Please pray for Hannah. Please pray for the tumor to go away. I pray that when the surgeons open Hannah up on Friday that the tumor is gone and the doctors are just so confused. I pray that GOD heals our Hannah.
Thank you for all the prayers.

8.11.2008

Written August 23, 2008

August 11th

Day 6

Hannah had another good day. I really enjoy these good days. She is starting to act like our Hannah. Hannah ate a lot and finally went poop. (She had not gone in 6 days.) We were told that the neurosurgeon were done with us so we would be moving to 3 Gold, the Oncology floor. They deal with tumors of all kinds.
 Hannah had physical therapy for the first time. It was pretty dramatic. We took her to a special room for physical therapy. She was scared. She did not know these people and they were wanting her to do all kinds of things. She was just not happy. We went back to her room and she was fine.
The Oncologist came in today and told us the results to the biopsy. The tumor tested negative for NeuroBlastoma and negative for GangloNeuroBlastoma. These are the things that the doctors were 90%+ sure that Hannah has. 
He said we were supposed to have the results that Friday, but none of the pathologist could figure out what kind of tumor Hannah had. It just kept testing like dead tissue. Thank You Jesus!
Since they can't tell what Hannah has they want to go ahead and do the other surgery. Hannah will have surgery this Friday at 8:30 to remove the large tumor in her abdomen.
Please pray that the surgery will go good and that the surgeons can remove all of the tumor with out trouble and minimal blood loss.

8.10.2008

Written: August 23, 2008

August 10th

Day 5

Today, Sunday, Hannah did great. She has ate more today then she has ate in like three months. (Thanks to the steroids...I am sure.) Hannah set up for about 25 minutes and ate her dinner. I was so proud of her. She has only had Tylenol for pain two times today. She is doing amazing. God is an awesome God and is doing wonderful things for Hannah. We are just in a waiting mode waiting for the pathology report.
Thank you for all the prayers and all the positive feedback. It really helps to know that people are praying for us and thinking about us.
Jackson is coming to the hospital tomorrow and will be spending the rest of the week with us. Jon, Hannah, and I are really excited to have him with us.

8.9.2013

Written August 23, 2008

August 9th

Day 4

We had another good day. We were able to move into a private room. Hannah's appetite is increasing and she is not taking as much pain medicine. We changed the dressing to her incision from her surgery. It  is not as bad as I was imagining but it is approximately 6 inches long down the middle of her back. She is such a strong girl. When she is not tired she is like her normal self. Hannah is smiling, clapping her hands, being silly and talking. She just gets tired pretty quick. We had a visit from physical therapy and occupational therapy and they will start working with her on Monday.

8.8.2008

Written: August 23, 2008

August 8th
Day 3
What a big day. Hannah had her 2nd MRI and her bone scan. The bone scan came back clear and the MRI showed the same thing it did the first time minus the tumor the doctor removed from her back. Hannah recovered great from her tests. We are getting discharged from the PICU Friday afternoon and we will be moved to the 4th floor, Nuroscience wing. It was a difficult to get settled in to the new room. We had a semi-private room with a boy named Jack. Every time I heard Jack I thought of Jackson and that did not help me since I have not seen my Jackson since Tuesday. But all in all we did good and had a good night.
We were informed we would have to wait until Monday-Wednesday to find out the result of the biopsy.

how it all started - 2008

Written August 23, 2008 

This is a copy of the caringbridge update I wrote to inform family and friends about Hannah.

Here is how things started and the first few days at the hospital!
Wednesday, August 6th
Hannah had not been acting normal for almost two weeks. She was cutting her 1 year molars and really fussy. Her appitaite decreased and she did not want anything to eat or drink since Thrusday/Friday of last week (Aug. 3rd-4th) Then we noticed that when she set up she would scream, not like in pain, just like she was uncomfortable and wanted me to hold her. Then the following day she would not stand or set up. She would not put any weight on her legs, they were like a wet noodle! Something was not right. I called and got her in to see the nurse practitioner, since this was the earliest appointment available. She said she had ear infections and a was a little dehydrated. She knew her legs was not most likely from that.....but wanted to just watch them to see if they would improve. That evening she did not get any better, I would say a lot worse. 
I could not get her to eat or drink or to do anything like my normal Hannah would. I seen her doctor on Tuesday morning and she was shocked about her legs, worried to say the least and said we needed to go to Arkansas Children's Hospital in Little Rock.
After a long 3 hours in a 1970 style ambulance Hannah and I made it on the stretcher to the ER at Children's in one piece. Riding backwards for three hours was very miserable!
We got to the ER, talked to a few doctors, they did a straight cath on Hannah to do a urine test, had to draw blood, she had to get and IV (the first one blew, so she had to be stuck twice), then off we went for a full vertebra MRI. Hannah had to be sedated and it took about an hour. It was so hard feeling so helpless. We finally got the results of the MRI. You know when at least three to four doctors, more white coats and a handful of nurses come into the room something is not right.
She has a 6 cm tumor (about the size of a baseball) that is shaped like a barbell, exstending from the soft tissue around her kidney pushing into/around her vertebra and growing on the back side of her vertebra
We were told she would have surgery first thing in the am, they put her in front of all the other surgeries, then we would go from there. She was admitted to the PICU for the evening.
She went to surgery first thing in the morning. 
A surgery that we were told would take at least 6 hours only took two and half maybe three hours. The tumor was not in the vertebra fluid just around it and/or around four of the nerves. The doctor took the tumor out around the vertebra and she instantly started moving her legs. PRAISE GOD! The part of the tumor by her kidney will have to wait for another day, since it will have to be retrieved from a different location.
Now she is recovering fine. They are keeping her very well medicated because she needs to lay on her belly for at least 24-48 hours. The tumor is getting tested and we will find out most likely on Friday if it is malignant or benign. If it is malignant it can spread, she will need chemo and surgery. If it is benign she will need another BIG surgery!
Jon and I are holding up fine. Hannah is staying STRONG and Jackson is hanging out with his Papa Boles and Nena.
Thank you for all your prayers. I will keep you posted as much as I can. Hopefully we will be out of the PICU by tomorrow.

a new direction

i have been trying to figure out what to do here on the blog.
i read a lot of blogs.
i enjoy a handful of blogs daily.
i like to think i could be a blogger.
but am i interesting enough?
would anyone be interest in me?
my thoughts?
my life?
my likes and dislikes?

anyway.
i guess i have the gift of gab and can ramble with the best of them.

i have been thinking and praying and brainstorming.
trying to figure out how to make this blog 100% represent me.
i have been through a lot in my life.
my short 33 years.
but those things have formed me to whom i have become.

many people don't know that my mother died when i was 15.
renal cell carcinoma
aka. kidney cancer
she was only 39.
my mother was the best mother hands down.
i wish she was here.

i wish she would have been here for my...
high school graduation
boy friends and breakups
college graduation
my first real job
my wedding
the birth of my children
the loss of my daughter
and
just to be there a phone call away for any mommy parenting questions
or
just to chit chat with.

with that being said.
many people don't know that my daughter died at 17 1/2 months old.
she was diagnoised with cancer at 13 1/2 months old
AT/RT
Atypical Teratoid Rhabdiod Tumor
Pediatric Cancer
very rare
less than 10% survival rate
4 month long battle
chemo
radiation
physical therapy
and
much
much
more.

i feel like all i have been through that my FAITH has been tested.
and
by the Grace of God i am me and i feel loved
and
I can't wait to see my mom and baby girl again.

i have came to the conclusion that i am wanting to share my daughters story
here on this blog
Hannah's journey started on August 6, 2008.
while she was battling i kept a journal on caringbridge.org
i have decided to share her journey here and update my blog every day that i updated her caringbridge in 2008.
my purpose is not to relive her journey, which i will.
but that is okay.
i feel like that if some other family out there is searching for information about AT/RT
and/or
pediatric cancer...i want to be able to be a resource for them.
we lived through this crazy terrible nightmare.
we lost our baby girl.
but what a blessing she was to us.
my husband and i have grown closer.
our faith has multiplied.
and we are making the best out of the life we have been given.

i will start her journey on tuesday.
here is a few pictures of our baby girl.
Hannah Lee