8.29.2008

Written August 29, 2008 

Thursday and Friday have been two really good days for Hannah. 
Thursday after noon we finally were able to move back to 3 Gold (the oncology wing).
 "It really felt good to be home," Jon and I said. This place is definitely going to be our home away from home for awhile.

Hannah was took off her morphine pump on Thursday she was able to just get a bolus when needed. That evening we took away the morphine completely. Hannah is still getting pain medicine to make sure she is not hurting but it is very minimal. 

Hannah has lost around 3 pounds or so since she has been in the hospital. We want her to pack on the pounds prior to getting her chemo and radiation. The nurses tried putting a feeding tube down her nose. To say the least that thing was out in less than 15 minutes. However, she loves the chocolate pedia-sure. She drank a whole can with a straw in know time. I think we will start giving her IV nutrition tomorrow as well as the pedia-sure to make sure she is properly getting all the nutrition she needs.
Hannah did get to be free for awhile today. The nurse removed the tubing from her port. She was free of tubes for almost an hour. Hannah receive a nice sponge bath as well as her hair washed; add some baby lotion and presto. 
A nice clean smelling baby. 

Besides Hannah watching her daddy play golf on the x'box, we signed the consent for her surgery on September 2nd to place the ommaya reservoir in her head. 
Hannah will also have a CT scan done on Monday to help the doctors with the surgery on Tuesday.
Thank you so very much for all the wonderful guest book entries and visiting our website. We really enjoy reading all the inspirational things everyone has to say. And Hannah really enjoyed all the hugs and kisses!
Keep the prayers coming. 
We give all the thanks to God for all the family and friends that we have to support us during this time in our lives.
 We pray that God pours his blessings on you all.

8.27.2008

Written August 27, 2008 

Hannah had a great past two days. 
We were supposed to move out of the PICU yesterday but there is no empty rooms on the oncology unit. We are just waiting on a room.

The results to the MRI were WONDERFUL! Our doctor removed ALL of the tumor and there was NO leakage of spinal fluid! The MRI just showed a little edema (swelling) which is normal to have after surgery.

THANK YOU SO MUCH FOR ALL THE PRAYERS!

Hannah has slept and ate a lot today. She has had a total of two yogurt's, almost 4 baby food jars, and a ton of pedia-lite. Also, a lot of wet diapers.
Hannah will be resting up from this last surgery and then on September 2nd she will get another port put in her head and start treatments.

We are requesting no visitors after Friday. 
We need to make sure Hannah stays as healthy as possible.
If you are interested you may send Hannah a letter through the Arkansas Children's Hospital website or by regular mail. The mailing address is here on the right side of Hannah's website. Just make sure you write her name on the envelope!
God bless you all.

(These e-mails and letters were very encouraging to us.)

8.25.2008 post surgery update

Written August 25, 2008 

We have settled into the PICU. 
Hannah is resting comfortably and so is Jon.
Hannah's blood was having trouble coagulating after her surgery. 
She lost a lot of blood and received 1 unit of blood in the operating room. 
The doctors and nurses gave Hannah a type of platelet product and her blood is coagulating normally. She is getting blood work done every four hours to monitor her blood count, coagulation, and electrolytes.
So far so good.
She is a fighter! 
Jackson did get to visit with Hannah for a few minutes tonight. He had been asking about her all day.
Our God is an awesome God. 
He has got her through two surgeries before and God is in control. 
He is the same yesterday, today, and forever. 
I believe our God will do it again. 
God has always came through for us and He is still the same GOD.
Praise GOD!
Thank you for all your prayers for our Hannah.

8.25.2008

Written August 25, 2008 

Hannah just made it out of surgery. 
It took about 4 1/2 hours. 
She did really well through the surgery. The doctor said that prior to the start of the surgery a instrument detected n0 movement in either leg then after they removed the tumor her left toes started moving.
The tumor that was removed from the first surgery had already started to re-grow. 
It has only been two weeks since the first surgery.
This tumor is super fast growing. 
The tumor that they went in to remove was from Hannah's T10 to L3 vertabra.
The doctor did have to remove a portion of each of these vertebra.
The doctor also put some sort of barrier between the vertebra and the abdomen area. The tumor has derived from the L1 and by putting this barrier in place, if the tumor regrows in either of these places it "SHOULD" not penetrate into any other area.
Hannah will have MRI tomorrow to make sure she is not leaking spinal fluid and to check everything out again.
I'm just about able to go see Hannah so I am going to go. 
I will try to update again tonight or tomorrow.
Thank you for all your prayers and faith.
God is in control of our little Hannah.

8.24.2008

Written August 24, 2008

Sorry for such a long wait for a new update. I have been trying to get all my old e-mails into this journal so that Hannah's story will be in sequence.
(That explains the "written" day being different from the day of the post)
 
Friday we got the results to the MRI of Hannah's brain. 
Her brain was clear of any tumors. 

THANK YOU JESUS! 

We had a meeting with our Oncologist to go over all the different chemotherapy drugs and radiation that Hannah will receive. That was one meeting I don't want to ever have to have again. 
Lets just say the drugs are very potent and some of the side effects are very scary. One of the side effects can be the loss of hearing high pitch sounds. Hannah had a hearing screen test and will have one prior to each of her treatments. She pasted the first screen test!
Hannah's surgery is in the morning, scheduled for 7:30 to remove all of the tumor that is still in and around her spine. 
The tumor is growing so fast Hannah is not able to move her legs again. 
This is a crazy fast growing tumor.
Hannah had a great weekend. Sunday she was a little moody and in pain. But, all in all she is well. She did have to have another CT scan of her vertebra tonight at 9 PM for the surgeons to look at in the morning.
We were also informed this weekend that Hannah will have a 4th surgery on September 2nd to put a different kind of port in her head. The port will be so she can get chemo to her brain and spine. Usually she would get a spinal tap done and chemo put directly into her spine. But, after having two back surgeries her landmarks are gone and they can't do a spinal tap through her incisions/scars.
Thanks so much for all the prayers and support. We have faith and God is giving us comfort that Hannah will be ok and her surgery tomorrow will go fine.

8.21.2008

Written August 24, 2008 

August 21st

Day 16

The last few days have been good. Hannah's digestive system has been working and she is eating very well. We have just been waiting and anticipating the results from the pathologist.
Hannah did have another MRI today. The doctors wanted another MRI to compare to the first two prior to her surgeries. They also scanned her brain to make sure it is good and healthy. We should get the results to the MRI tomorrow (Friday).

The results from the biopsy came today. We had to get results from a pathology lab all the way in Boston. They are really good with rare tumors.
 Hannah as a tumor called,
A RHABDOID TUMOR (Atypical Teratoid Rhabdoid Tumor)
(If you search it make sure you are reading about a Rhabdoid Tumor not a Rhabdoid....sarcoma or something else.) The best place to search is www.cancer.org, this is what the doctor here recommended if you like to research stuff online.

Ok, to clear up what this is. This is a very very very rare tumor. The doctors here see one of these tumors maybe once every two-three years! It derives from the spinal column, brain (hence the MRI of the brain), and around the kidney tissue, and muscle.
Hannah is having a THIRD surgery on Monday morning to get out a small amount of the tumor that was left deep in her spinal column. We have to treat this tumor very aggressively and very quickly. We plan to have all the tumor out on Monday and then as soon as she is well enough, she will start treatment. 
She will have to have a very strong dose of chemo and radiation for the next year, maybe the next two years. After she heals from this surgery on Monday and has treatment we may get to go home for two weeks are so and then have to come back for a week of treatment. 
That will be our plan for the next year. 
A week at Arkansas Children's Hospital then two-three weeks home then back to Little Rock. While at home Hannah will still be on super strong medicine.
On the up side, if this tumor does not regrow during the first two years of treatment, she "SHOULD" (notice quotations) be in remission for the rest of her life.
Our doctor has treated one of these Rhabdoid tumors before. They boy responded to this treatment and is now in remission. That is nice to know that our doctor is familure with this crazy tumor.
Thank you so much for all the prayers.....keep them coming!
We are keeping the FAITH. 
We know our GOD is in control. 
Hannah will survive, we just have a very long road ahead of us.

8.18.2008

Written August 24, 2008

August 18th

Day 13

Hannah's blood count was down today and had to receive a unit of Packed Red Blood Cells. She has been really nauseated and not really feeling that great. 
However, they did decrease her morphine pump.
Once Hannah was done getting the blood with in a couple of hours she looked and was acting like she was feeling so much better.
Jackson is back with us. He and Jon are going to start staying the night in the Ronald McDonald House.

8.17.2008

Written August 23, 2008 

August 17th

Day 12

We had a pretty good weekend. Hannah has slept a lot and so has Jon and I.
Hannah did throw up twice, but after that she acted as if she felt better. She held everything down after that. The doctors decreased her morphine pump, she is tolerating everything like a champ. She is pretty bruised from the surgery but does not act like it seems to bother her.
Jon and I both held Hannah today, She really enjoyed it and so did we. She is still moving both feet and legs. Not a whole lot of movement but they are moving. Physical therapy will be helping Hannah with her leg movement this week.
Hopefully we will get some results from pathology on Wednesday or maybe Friday.
Thank you for all your prayers. God is taking care of His little children and with His grace, Hannah will be back to her old self soon!
God Bless you All!

8.15.2008 & 8.16.2008

Written August 23, 2008

August 15th &16th

Everything is going good. Hannah made it through the surgery just fine. Surgery started a little later than scheduled. I think they started around 10:00. The surgery lasted for about 4 hours. The tumor was NOT attached to any organs. It was just pushing them around like we thought. The tumor WAS attached to some muscle around the vertebra and to some nerves. Dr. Little had to get Dr Elbabaa (the neurosurgeon) to help separate the tumor from the nerves.
There are three major nerves that go down the right leg. One nerve was fine, one nerve was saved, and one was wrapped up with the tumor and it had to be cut. The doctors are not too worried about having to cut one nerve. They said that babies seem to bounce back and over compensate for a loss. They feel with extensive physical therapy she will be walking again.
The tumor when removed appeared to be necrotic (dead) tissue with some round blue cells. Round blue cells can be malignant but also nerves are derived from blue cells. So, to be on the safe side they went ahead and put a port in Hannah's chest. It is a port that is under the skin that can be numbed with cream and then they can use it to draw blood, give IV fluids, and/or any other medicine or treatment if necessary. Having the port will decrease the times she would have to be stuck with an IV or stuck to get blood for lab testing.
Hannah's incision from this surgery is by her belly button and goes around to her side. It is about 5 inches long. After the surgery we were able to come back to our room on the oncology floor. Hannah did so good during the surgery she did not have to go to the PICU, which is a major blessing. A lot of nurses and doctors were shocked she did not have to go to the PICU after such a major surgery. As well as shocked that she is doing so well.
Hannah is not in much pain and she is already drinking pedialyte. We have to wait about 5-7 days to get results from pathology to find out what exactly what the tumor consisted of and what typed of treatment she may need if any!
Thank you so much for all the prayers and being concerned about our Hannah. She is a fighter and with God on our side all things are possible.
Jackson is doing well and loves his sister so much. The hospital has a waterfall that you can through money in and make a wish. When Jackson goes down stairs with Jon or I he asks for some money. Then he wishes every time for Hannah to get better. He is so precious.
Also, yesterday after Hannah's surgery Ty Pennigton from extreme Makeover Home Edition was at Arkansas Children's Hospital. A boy named Job has been sick with Leukemia, I think, for over 6 years and he is getting a new house. Ty and the film crew were outside our door filming. When they were done Ty came in to each room on the oncology floor and talked to the patients. Jackson, Hannah, and I took a picture with Ty! IT was neat.
Thanks again for all your prayers and support. I will keep you posted with any changes and let you know what we hear from pathology.
Please continue to pray for a Miracle and that the tumor will be nothing except dead tissue.

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