Hannah Picture Montoge

Here are a few of the pictures from before and during Hannah's Journey.
She is truly missed.
Even though it has been over 5 years...it still seams like yesterday that she was in my arms.
I miss my baby girl and it's hard to believe that she would be a 6 year old .

WE LOVE YOU HANNAH BANNA!!!

6.17.2010 (last caringbridge update)

Written Jun 17, 2010

To those of you who still visit Hannah's caring-bridge, I thought I would up date one last time. I "think" this will be my last post!

If you want to keep up with us and Hannah's HOPE you can stay up to date by viewing our website and blog as well as joining our cause (Hannah's HOPE) on Facebook!

www.hhopef.org

It seems as if I am only doing up dates every 6 months. December 2nd, is Hannah's Heavenly Birthday and June 15 is Hannah's earthly birthday. She would now be 3 years old. That is pretty crazy to think about.

Our whole family misses Hannah so very much. Not a day goes by that she is not thought about. That little girl of ours had a HUGE impact on so many people and still does to this day.

Hannah's HOPE Foundation is growing and growing, it is uterly amazing to see the growth that has happen with her foundation in just a year and a half. We have been blessed and able to assit many families in need. It is astonishing too see what Hannah's HOPE is becoming!

Philippians 4:13 says, "I can do all things through Christ which strengthens me."

Our hearts are still heavy with sadness because are baby girl is not with us, but we do our best to not be selfish but to have joy in knowing that she is in a much better place. We still have that peace that comforts our heart and gets us through every day. We hope to see Hannah again and live with her for eternity.

"May the God of hope fill you with joy and peace as your trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13

We LOVE you Hannah Banna and can't wait until we are together again up in the clouds!

"And we know that all things work together for good to them that love God, to them who are called according to his purpose." Romans 8:28

Keep the Faith!

12.2.2009

Written Dec 2, 2009 

 

  One year ago today, Hannah received her angel wings. It is hard for me to believe that a year has now gone by with out Hannah. It just seems like yesterday we were all home together being our happy family doing things that normal families do. Then the indescribable happens, it is amazing how in an instant things can get turned upside down and how your lives journey can take another path. Cancer is awful and what it does to these children is terrible.

We are now copping and learning how to be a family without Hannah here on this earth. We incorporate her in everyway possible and Jackson talks about her all the time. We are figuring out our new “normal” life and walking down our new path with Jesus lighting the way.

We are doing are fair share of grieving. We are NOT letting grief define who we are but we are simply letting God define who we are. We are together putting one foot in front of the other and being thankful for all the things we had, all the things we are, and for all the things that are yet to come.

"Rise and go; your faith has made you well." 

Luke 17:19

We miss Hannah like crazy! I still look back into the rear-view mirror when driving, thinking that she should be there in her car seat. But with God’s grace he has given us the strength to make it through each day and we glorify him every step of the way. Whether, it is through our daily life or through Hannah’s HOPE Foundation we have felt God comforting us, giving us strength, and putting the right people in our path when we need them at that very moment in time.

“Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.”

Matthew 6:19-22

We are following God’s plan for us.

Two weekends ago we were invited to attend the Arkansas Children’s Hospital Memorial Service for the Oncology patients/families. It was a very emotional day, but the service was beautiful. There was a slide show of all the children, we lit a candle in memory of Hannah, a lovely couple told us about their story of loosing their daughter, and an amazing choir sang Where Joy and Sorrow Meet. The words of that song are touching. The verse stood out to Jon and I.

There is a place where hope remains

In crowns of thorns and crimson stains

And tears that fall on Jesus’ feet

Where joy and sorrow meet

Just to think, all our tears that we have shed and will shed are falling on Jesus’ feet. He is our savior, without him, we would be lost. Through him our Faith has withstand the grief of loosing Hannah, he has given us HOPE and in that we are reassured that we will soon see Hannah again! How we long for that day to come, Jackson even tells us he is ready to go to Heaven to see Hannah. Our treasures are in heaven not on this earth!

“Faith is the confidence that what we hope for will actually happen; it gives us assurance about the things we cannot see.”   Hebrews 11:1

We again want to thank everyone for thinking about us, those we know and those we have yet to meet, Thank YOU! This past 16 months have been a whirlwind and with your love and prayers we have truly felt your support. Thank you for keep us in your prayers. Also, please keep Hannah’s HOPE Foundation in your prays as we continue to grow. (www.hannahshopefoundation.org)

Keep the Faith!

9.28.2009

Written Sep 28, 2009

 

September is Pediatric Cancer Awareness Month and Hannah's HOPE as been showing our support and spreading the word that kids get cancer too!

We have been so blessed this month by so many people. Each of our events have been a success and each event has been better than I could have ever imagined!

We have been at Jump!Zone for the kids to play, we had a golf tournament, a Gala, a 5K run/walk and hot wing eating contest, and we finished the month off with a kids carnival! Each and every event was amazing. The support from each and every individual who has contributed has been astounding.

The name Hannah's HOPE is getting around, people are hearing about us and that is great! We have been on the radio advertising our events, advertisments in the newspapers, and even Hannah's Story was in a local magazine, Peekaboo.

September has been a success!

I am so proud of how Hannah's HOPE is developing. The need is there to help other families that have kids with cancer. We have already helped over 10 families since March; enabling these families to be with their children while battling this disease. We are receiving 2-3 new applications a month. The need is there and these families need our support!

"Do not withhold good from those who deserve it when it is in your power to act." Proverbs 3:27

We miss Hannah like crazy, it seems like it was just yesterday that she was our healthy, happy baby girl. I can't believe that this time last year we were at Arkansas Children's Hospital watching Hannah receive her chemotherapy and radiation treatments, having surgery after surgery fighting for her life. Such a brave girl she was.

I think about all the kids who get newly diagnosed each day and all the kids that we have had the pleasure to meet who are fighting for their lives. I pray each and every day for all the kids I know and the ones I don't know who have been stricken with this terrible disease! We are doing everything within our power to make a difference and to help these kids and their families.

I ask you...... Are you doing your part?

All in all September has been an amazing super busy month and we have been blessed. We have seen God's amazing hands in each and every event we have done this month and we are excited to start planning for our future events and our 2nd Annual events next year!

"The Lord has done great things for us, and we are filled with joy." Psalm 126:3



Below is the link to the slide show of Hannah's Journey we played at the Gala!

http://www.youtube.com/watch?v=IIOAs1kFDvI

***I also updated the blog with pictures form our September events...so go to the website and view the blog!

www.hannahshopefoundation.org

8.5.2009

Written Aug 5, 2009

 
  08.05.08

This day is the day that we were told that Hannah had cancer.
A year ago today our lives took a new path and this day will never be forgotten.

I can't believe a year has gone by since Hannah's journey started. At 13 1/2 months old she was so brave and strong, she fought as hard as she could for four months. I think about how long those four months seemed while we lived in the hospital and all the up and downs we in countered along the way. How we were always as positive as we could be and highly optimistic; even though kids diagnosed with AT/RT have a mere 10% survival rate.
We give all of the praise to God for making those 4 months bareable and giving us the strength and guiding us to make the right decisions for Hannah.

Hannah touched many people in her short life. I have heard stories how she has impacted peoples lives who never had a chance to meet her. I think about the impact she has had on my life. I treasure ever second of every day that she was on this earth and I am so anxious to see her again in Heaven.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." Revelation 21:4

This path we have been on is not an easy one. It is something that I wish know one had to go through. It just breaks my heart thinking of all the kids, 12,400 U.S. Children, this year that will be diagnosed with cancer. They each will encounter many chemotherapy treatments, radiation, sickness, scans, tests, pokes, tears, life style changes, and their families will have to adjust to a new way of life.
And out of that 12,400 children, statics says that 2,500 children will die from cancer. There are many more families going through a similar situation as we have then you would think. Please keep them in your thoughts a prayers.

"The righteous cry out, and the LORD hears them; he delivers them from all their troubles. The LORD is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:17-18

We appreciate each and every one of you that has followed us during Hannah's journey, all the many prayers, and the encouraging words. We ask that you continue to pray for our family and the wonderful ministry that we have been called to do with Hannah's HOPE Foundation. We are helping families who are going down a similar path as we did with Hannah.
September is Pediatric Cancer Awarness Month and we are hosting many events to helps spread that word that kids get cancer too and to raise money to help support Arkansas families that have children with cancer.

Blessings to you ALL!
Keep the Faith!
-Tiffany, Jon, & Jackson

6.2.2009

Written Jun 2, 2009

 

Six months ago today, Hannah went to Heaven. It sometimes feels like yesterday and then other times it feels has if it has been years since I have held my baby girl.

I felt like I should up date the caringbridge today and let everyone know how things are going with us. All in all I think we are doing good. I am staying super busy with Hannah's HOPE Foundation and trying to keep up with Jackson. Jon is back to work and then when he gets some free time he is enjoying his motorcycle. Jackson is Great! He keeps us going and he is always putting a smile on our faces. He is in t-ball right now and enjoying every minute of it, escpecially when he is in the out field when he can roll around in the grass.

It is amazing to me at all the lives that Hannah has touched. Hannah is still touching the lives of people today. It has only been 6 months and Hannah's HOPE is already a 501(c)3 non-profit foundation and we have helped 3 families. We were informed last week that we now have a corporate sponser. We will have an event this August and then our goal is to do something every week in September. September is Pediatric Cancer Awareness month and we want to spread the word. Kids get cancer too and they need our help!

Hannah would be celebrating her 2nd birthday on the 15th of this month. We plan to take balloons to the graveside like we did at her funeral. I think Jackson will be happy with celebrating Hannah's special day this way, we may do cupcakes too.

We just want to thank everyone for their continued love, support, and prayers. This road we are traviling is not an easy one but by the Grace of God we are Comforted.

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need."  Hebrews 4:16

Keep the Faith

2.6.2009

Written Feb 6, 2009 

I want to let everyone know that things are well. I am staying super busy working on Hannah's HOPE Foundation. It is a ton of work and I am in the process of getting the foundation to be non-profit status. I am excited that soon I will be able to share with you all the wonderful things that we have in store for the foundation and all the people we hope gets blessed in return.
Thank you for all your support and prayers.

I have two special prayer requests.

First, Miss Riley. She was diagnosed with Medulloblastoma at age 7. We meet her at Carti when Hannah was receiving her radiation. She is an awesome girl and a strong fighter. She has recently had pneumonia and has taken a turn for the worse. Riley is now in the PICU at ACH and is on the ventilator to help her breath. Please check out her website and pray, pray, pray for Riley and her family.
www.caringbridge.org/visit/rileylentz

Also, I have been informed of a precious little girl named Cora. She is 11 months old and as been diagnosed with Neuroblastoma. Cora is in the PICU at a hospital in Kansas. I believe she is having her second surgery today and is already having chemotherapy treatments. Her parents have a lot of Faith. Cora's mom's blog posts remind me a lot of mine when Hannah was in the hosptial. Please pray for Cora and that she will be healed.
http://themcclenahans.blogspot.com/

Please pray for these girls to be healed!

"Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in Heaven." Matthew 18:19

Thank you and Keep the Faith!

1.12.2009

Written Jan 12, 2009

Hello everyone!

We wanted to do an update and let you know that we are doing well. Our days are like an ocean. Sometimes the tides roll in and other times we have calm waters. All in all we are making it one day at a time with God's grace and mercy all around us.

Jon and I have a lot of projects in the works. Our number one priority is to establish a foundation that we are developing. Our goal is to help other families financially that have children in the hospital battling childhood cancer.

We have witnesses many situations first hand. We have met parents that are unable to be with their kids while they are in the hospital because they will lose their jobs. Also, parents not working/losing their job to be with their kids and are unable to pay car payments, bills, rent/mortgage, or even unable to have food to eat.
A parent should not have to choose. A child needs their mom and dad especially when they are battling cancer!

Hannah's cares account is still set up to receive donations; and the funds in that account will be moved to the foundation once it is completed. We do know of some other foundations that might be able to help at this time. If you are a family or know a family that is in need please e-mail me. My e-mail is located on the right of the page (e-mail author).

We appreciate all the prayers that we are still receiving for our family. We believe in prayer and the strength and comfort it provides.

"My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." (Psalm 62:1-2)...."Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken." (Psalm 62:5-6)...."Trust in him at all times, O people; pour out your hearts to him, for God is our refuge." (Psalm 62:8)

Keep the Faith!

12.17.2008

Written Dec 17, 2008 

Thank you to everyone for your heartfelt words of condolence and love. It was thoughtful and kind of each of you to take the time to share with us your words of encouragement, your memories, and your stories of how Hannah has impacted your life and others. Your words are not only a comfort, but a source of strength for our family during this difficult time.

We love you all. Please continue to Keep the Faith and do not forget about (and to pray for) all the other kids that are battling Childhood Cancer daily!

Even though loss, disappointment, or failure can be crippling, don't allow your Faith in the goodness of God and His love for you to waver. His promise to you is that "all things work together for good" (Romans 8:28)....God's love, grace, and mercy assures us that even though we endure deep sorrow, "joy comes in the morning" (Psalms 30:5)

Always....Keep the Faith!

12.2.2008 @ 12:12

Written Dec 2, 2008 12:12pm

At 12:12 pm today Hannah became an ANGEL!


We would like to thank everyone for all the prayers and support they have shown our family.

Funeral arrangements will be 2 pm, Friday, December 5, at Wasson Funeral Home in Siloam Springs, AR. All are welcome. In leau of flowers, contributions can be made to the Hannah L. Boles cares account at any Arvest Bank.

Let us remember the other kids who are going thru cancer and keep them in your thoughts and prayers.

KEEP THE FAITH!!!

12.2.2008

Written Dec 2, 2008 9:13am

Hi everyone, This is Tiffany's sister, Tennille. Tiffany asked me to update the site so everyone will know what is going on. Hannah was placed on a Bi-PAP to help her breath. The Bi-PAP provides support when needed. She began to struggle a lot with her breathing and they were going to have to place Hannah on a ventilator. As Tiffany told you in the last entry, the MRI showed that 5 tumor cells were growing at the base of Hannah's brain. It was also discovered that the whole lining of Hannah's brain was covered in cancer cells as well. As Tiffany told you, these were inoperable. The decision was made to remove Hannah from the Bi-PAP. The Bi-PAP was removed at 2:15am on November 30th. The doctor's thought Hannah would pass away. On December 1st, the EVD was turned off. The doctor's thought Hannah would pass away. Last night, all tubes were removed from Hannah's body and she was brought home. The doctor's thought she wouldn't make it through the trip. Today, she is laying in the bed cuddled with her Mom and Dad. Hannah is a true fighter!!!!! She is a lesson to us all! Even at her sickest, she would still blow kisses to everyone. No matter what you are going through, it is never to great to give up on love! Hannah showed love always even in her hardest times! We are all still praying for a miracle!!! But even if we don't get what we want, GOD is in control! This little girl has touched the hearts of many even in her short 17 months. More so, then probably we have in our whole lives!! Please pray for Hannah and her Mom and Dad! They need your prayers greatly! And thank you all for keeping up with Hannah, she has so blessed my life as I know she has all of yours.
For I am the Lord, your GOD, who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13

11.29.2008

Written Nov 29, 2008

We were just informed this morning, with a close look at Hannah's MRI done on the 27th after her surgery, that Hannah has approximately 5 tumor cells cells that are growing in the base of her brain.

We are waiting to see if they can give her a cycle of chemotherapy to help kill the cells. They will not operate on her brain. It is just a waiting game and we are waiting on HER MIRACLE!

We are speaking healing over her body! God is the miracle worker and we believe a MIRACLE is going to happen.
Please speak out and pray to God for this miracle to happen in Hannah's body!

BELIEVE!
KEEP THE FAITH!
GOD IS A MIRACLE WORKER!

"....for he hath said, I will never leave thee, nor forsake thee." Hebrews 13:5

11.28.2008

Written Nov 28, 2008

Hannah finally went into surgery at 6:00pm.

She was diagnosed with Hydrocephalus (fluid on the brain). The surgery was to place and EVD (External Ventricular Device/Drainage). The EVD is a catheter type device that lets the extra cerebral spinal fluid (CSF) exit the brain so that the swelling from the hydrocephalus can reside. Hannah just had a CT scan of her head last week so in less than a weeks time this has occurred.

The "plan" is to watch her for the next 3-4 days and test her CSF and monitor the pressure of her brain with the EVD. Then at some point in time Hannah will have another surgery to place a shunt or some new thing that is similar to a shunt.

The old ommaya reservoir is not 100% to blame for the hydrocephalus and this whole issue. There are a lot of other factors that could have caused this too happen. It 'COULD' be due from the radiation and dead cells sloughing off and clogging the ducts in the brain as well as other issues. But as of now the doctors are not certain what is causing the problem.

As for Hannah she is pretty much out of it. She WILL now respond when spoken to and open her eyes and she will move her eyes around to try to look at you. Her eyes are still not dilated like normal. The are reacting to light which is really good. She enjoyed watching/listening to Piglets Big Movie today; it is her favorite movie since we have been in the hospital.

This evening she started to run a low grade temperature. The Tylenol has seemed to help. Hannah went potty four times yesterday so she is healing up great from the bowel obstruction surgery last Sunday. We are unsure when she will be able to resume her chemotherapy protocol. Hopefully we will find out more information about her chemotherapy regimen tomorrow.

I will try to update as much as I can. Please continue to pray for the doctors and nurses. Also, pray for Hannah's strength and for a complete healing of her body to take place.

"In my distress I cried to the Lord, and he heard me."
Psalm 120:1

Keep the Faith!

11.27.2008

Written Nov 27, 2008

SURGERY TODAY!

Hannah slept all day which was concerning to me then last night around 7pm her eyes appeared dilated to me. The nurse checked them out and the were reacting to light but not getting much smaller.

Anyway, Hannah had a CT scan of her head this morning. It shows that the old ommaya site is leaking CSF (cerebral spinal fluid), which we knew, and it is collect in/around her brain.

The doctors said we will be having surgery today. She needs platelets so I don't know when the surgery will be and I am not 100% sure exactly what they will be doing in the operating room.

Please pray for Hannah's strength and the doctors and nurses that will be taking care of Hannah.

11.26.2008

Written Nov 26, 2008 

What a sleepy day!

Hannah has slept the majority of the day. I did make her get up and play with occupational and physical therapy today. She has lost a lot of her strength the past two week while she been so sick. I really want to see her walking up and down the halls again soon. It will take a lot of work but she should be back to where she was soon.

Last night after I posted the update Hannah went potty. She also just had another little dirty diaper a few minutes ago. She should keep going potty as her belly heals up.

We did have another ommaya reservoir situation tonight. For the fourth time we had to get one of the neurosurgeons to patch up Hannah's leak OLD ommaya site. The neurosurgeon did say that if this happens again Hannah will have another surgery to completely fix the leakage.

Hannah's lab counts were really good today and her ANC was over 3,000. Today, Hannah's platelets actually went up on their own. Maybe they are finally doing what they are supposed to be doing. She did not to have to have anything extra today.

The game plan for the next few weeks is to let Hannah heal from her last surgery for rest of the week. Then, on Monday Hannah will have her monthly chemotherapy; cycle C, if her counts are good. Depending on how she tolerates the chemotherapy will depend on when we go home. Cycle C is the lighter chemo cocktail of the three so I pray she takes it well.

"The Lord is my light and my salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid?" "Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident."
Psalms 27:1,3

Have a Happy Thanksgiving!

***Also, please say a special pray for baby Colin (7 months old), He was diagnosed with AML a type of Leukemia. I graduated High School with his dad and Jon graduated High School with his mom. Small world! They are a great family that needs all the love, support , and prayers they can get while going through this difficult time.

11.25.2008

Written Nov 25, 2008 

Hannah is recovering pretty good.

Yesterday, (Monday)
Hannah slept a lot. Her abdomen girth has been decreasing which is a good thing. Everything has gone pretty well. Although Hannah's NG tube has been acting up.

The tube has to be small to fit in her little nose that the tube keeps getting clogged. (She has to have the NG tube in until she goes potty.) The nurses were having to come an irrigate her NG tube every two hours and every four hours they are checking her abdomen girth for any change.

Hannah's platelets were a little low so as usual she had a platelet infusion. All of Hannah's other lab counts are within the normal range. The surgeons think she is doing well and the neurosurgeon has been keeping an eye on Hannah's old ommaya reservoir and checking for leaks. The neurosurgeon did say that if it leaks again she may have to have another surgery to stop the leaking.

Today,
Hannah is doing about the same. She wanted to go out for a walk. After two or three days in the room Hannah gets cabin fever. She likes to get out and look around. I can't blame her I enjoy our walks and getting out too. After our walk she was extremely tired and has been sleeping the majority of the day.

Hannah is having bowel sounds. (This is really really good!) Her bowels are waking up from the surgery. The NG tube is still giving her trouble and the good news is the fluid coming from her stomach is turning a clear color. The doctors decided to go ahead to pull her NG tube out since it is not cooperating. She still yet has to go potty but she should soon! Hannah enjoys being NG tube FREE and she could not be happier!

The doctors think that Hannah is doing good. She was taken off of one of her antibiotics and is now only on two. Hannah's potassium was low today so she is going to receive a potassium bolus day (a small amount to help it from decreasing lower).

"You can find strength in God and in His Word"
Joel 3:10

Thank you for all your continued prayers for Hannah.
Keep the Faith

11.23.2008 (post surgery)

Written Nov 23, 2008 

Hannah's surgery went well!

The surgery took only about 1 1/2 hours. They found that the obstruction was from scar tissue from the previous abdominal surgery she had. They were able to remove the scar tissue without cutting any of the bowels. Everything else looked good.

Hannah is back in her room and resting nicely. The next step is to wait until she goes to the bathroom and then we can take the NG tube out. This should hopefully last only a couple of days. She was able to see her brother Jackson today and wish him a Happy 4th Birthday! She always lights up when he is around. As I set here and type, Mom, Hannah, and Jackson are all in the bed together watching a movie. It is so nice to see the whole family together! I would get in there but there is not much room left.

We thank you for all the prayers that are going up for Hannah. We must also remember the other children in this Hospital! Thank you and God Bless!

Keep the Faith!

11.23.2008

Written Nov 23, 2008

Hannah is having SURGERY this morning.

She has a possible bowel obstruction. Hannah had an NG tube placed last night to try to remove the bile and air in her belly but there is no change.

Her counts are good right now and the window of opportunity for her to have a surgery is slim. You never know what her counts are going to be.

Hannah is about to receive a blood transfusion and then off to surgery she goes.

I will update more soon.

Please pray for Hannah's protection and strength and also pray for the doctors and nurses who will be taking care of Hannah.

Keep the Faith!

11.21.2008

Written Nov 21, 2008

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
Isaiah 41:13

Hannah's liver is fine!

The resident surgery doctor who informed us that something was wrong with her liver was mistaken. Hannah's liver is fine, however her liver enzymes (blood test) is slightly elevated but nothing to be alarmed about. If she was running a fever and still throwing up there could be an issue, but this is NOT the case. Her liver enzymes will just be monitored daily.

The resident surgery doctor should have told us that Hannah's colon did not have enough gas stuff in it and her digestive track appeared to be slowing down. This has caused her belly to extend and become rigid.

I spoke with the general surgeon this after noon after Hannah had another abdomen x-ray today. He was informing me about the x-ray results and her colon. I politely asked, WHAT ABOUT HER LIVER? He was clueless what I was talking about. I explained what the resident shared with me and the surgeon deeply apologized!

Needless to say to fix Hannah's problem she needs to stop throwing up and needs to go potty. She has only thrown up 3 times today and she has already went potty this evening! She should be on the mends from this ordeal.

Today, Hannah's ANC was 5,561! I honestly can't remember the last time it was this high! Now her body can finally start to heal. She was taken off of one of her antibiotics today! Hannah is now only on one antibiotic and the finally were able to discontinued the phenobarbital! Hannah did receive a platelet infusion today. The doctor stopped the Neupogen shots since her ANC is elevated; now her platelets should hold their own.

It has been a crazy past few days (past few weeks). Hannah has already been in the hospital for 26 days this time. She is continuing to improve and if all goes well this weekend we may truly be home by Thanksgiving!

Sorry, for the scare about the liver! This is the type of situation our family has been going through since August 5th. I believe we have just decided to buckle up and enjoy the ride as much as possible.
Hannah is blessed to have so many people concerned about her and her health. Thank you for all the prayers for her during this roller coaster ride. We now that God is in control and she will survive!

Praise God for Hannah being tumor free and fever free!

Keep the Faith!

11.20.2008

Written Nov 20, 2008 

START THE PRAYER CHAINS!

Hannah is still fever free.

But, last night she could not sleep and she was tossing and turning all night long. I could not console her at all. She was exhausted and something was not right.
Hannah started throwing up around 7 or 8 last night and continued all through the night. She has thrown up almost 20 times in 12 hours.

This morning her abdomen appeared distended and her skin is a little yellowish.

Besides the normal lab work she had a liver function panel drawn. Her Liver enzymes are elevated. Hannah platelets were only 43 after having a infusion yesterday.

Hannah's ANC is 2,048 today which is really good!

This morning Hannah has already had an abdomen x-ray and a CT of her head. The CT showed that her brain bleed has not grown which is good.
The abdomen x-ray showed a possible obstruction in her liver!
(What? Are you kidding me? Seriously?)
We are waiting for the surgeons to look at the x-ray and more surgeons to come and examine Hannah. They are unsure what it is and we don't want it to be more tumor!

If she keeps on throwing up she will have to have a NG tube placed down her nose into her abdomen so she will not aspirate the throw up in her lungs.

Please, Please, Please, Pray that this so called 'obstruction' in Hannah's liver will disappear.

Hannah had such a good day yesterday, the devil will NOT bring her down. Hannah is a strong fighter and she will be victorious!

Also pray for Hannah's strength.
Keep the Faith!

"He will have no fear of bad news, his heart is steadfast, trusting in the Lord."
Psalms 112:7

11.19.2008

Written Nov 19, 2008

Hannah is officially 48 hours fever free!

Today has been a pretty good day; actually a really good day. As good as a day it can be if you are in the hospital.
Although, early this morning we had a little scare. Hannah's port (in her chest) was not functioning properly this morning around 2 am. The nurses had to access her port twice and put a medicine in it to make it work again.

Hannah did get taken off an antibiotic today. She is down to just two antibiotics and the doctor decreased her phenobarbital again.

ANC is 720 today!

The neupogen shots are doing their job. We were informed today that neupogen shot can decrease platelet counts. Hannah's platelet counts keep decreasing. She received a platelet infusion again today. After Hannah's ANC is over 1000 for two days she will be taken off the neupogen shots and her platelets should start holding their own.

If all goes well the doctor hopes to have Hannah home by Thanksgiving!

"I will not die but live, and will proclaim what the LORD has done." Psalms 118:17

Keep the Faith!

11.18.2008

Written Nov 18, 2008

Hannah has been over 24 hours fever FREE!

We are excited. You can tell that she is feeling better and heart rate is finally going back down to the normal range.

Sunday, was a busy day!
Hannah's counts were all crazy. She had to receive a blood, platelets, and a potassium infusion. Hannah is on so many antibiotics that can't be given with any other medications it was difficult to try to fit everything she needed into one day.

Hannah had a low grad fever the majority of the day. Nothing over 102* so we were excited about that!
Her ANC did increase for 0 to 10! That's a start.

Yesterday, (Monday)
Hannah had a pretty good day. Her platelets were low yet again and she had to received another infusion. Everything else seemed to be holding it's own.

Hannah's ANC has increase to 21! The Neupogen shot dose was increased and we are slowly seeing results!
Hannah's highest temperature was 101.3*.

However, the doctors did take her off one antibiotic and decreased her phenobarbital (She should be off this medication completely, soon!). This is good. We have to be able to get rid of the antibiotics to get to go home.

Hannah finally felt well enough to try to do a little physical therapy. She is really weak since she has not done anything in almost two weeks. She did move her left leg by herself once. We are going to have to back track a little and hopefully she will be walking down the hallways again soon.

Today,
Hannah has been coughing up stuff from the mouth sores that are in her throat. Her actually mouth is improving a lot. Hopefully the mouth sores are almost completely gone and Hannah can get off of the Morphine pump. I have not talked to the doctor today so MAYBE he will be taking her off another antibiotic today!

ANC is 31 today, it is still improving!

Hannah will have to have platelets again today. All of her other lab work looks fairly good. Today we are going to see if Hannah will do a little physical therapy and occupational therapy to get her back in the swing of things. I think she is feeling better; we will see how she tolerates it all!

Thank you so much for the continuous prayers and believing with us for a complete and total healing of Hannah's body. We know that she will survive and that this crazy disease will disappear.

We are praising God for Hannah being tumor free and for her temperature to be normal! Also, for all the wonderful things he is doing that we can not yet see and all the things that will be done. Thank you Jesus!

We are truly blessed to have all the support and love from everyone; thank you so very much.

Keep the Faith

11.15.2008

Written Nov 15, 2008

Today, was an alright day.

Hannah ran only a low grade fever the majority of the day. Then around 4 o'clock this afternoon she spiked a fever of 104.6; the highest fever she has had yet. We gave her a dose of Tylenol and the fever has gradually went down.

Jon and I finally received the results from the EEG today. The 'episodes' Hannah had when she was unresponsive was seizures. If she does not respond to us talking or touching her she is having a seizure, if she responds to us then it is a small low grade seizure. The neurologist thinks these seizures are happening due to the high fevers and the bleeding in her brain. The EEG showed the electricity in her brain to be fine. Hannah will be treated with a new seizure medicine called Keppra for two years. The phenobarbital deactivates chemotherapy so she will be taken off this medication.

I forgot to inform you that Hannah's echocardiagram (ultra sound of her heart) showed nothing except a healthy heart!

Hannah did have another strange situation occur today.

After her fever spiked, we gave her the Tylenol and then changed her diaper, I noticed some drainage from the top of her head. On Hannah's right side of her head where her OLD ommaya reservoir was started to leak cerebral spinal fluid. She was so mad and her fever was so high the old reservoir location filled so full of spinal fluid it would not go back down. I requested the neurosurgeon on call to be paged.

It was the same doctor that we met down in the ER on August 5th. He is the doctor that informed us Hannah had a tumor and would have to have surgery the next morning. He is a man that Jon and I will never forget.

Anyways, we only have two options. Try to put another stitch in her head where it is leaking and hope that fixes the problem or take her in for surgery to drain it out and try to make it stop leaking. We all agreed that we should try the stitch first.
Hannah and I set up in the bed and the doctor put the stitch in her head right in the room. She did not fight us or cry. She just set there like it was nothing. He said that Hannah did better than any adult man he had ever put stitches in.

We have such a brave, strong, incredible little girl!

Hannah's ANC was 0 today. She has no immunity; her immune system is not working and she could catch anything. It is extremely important right now that Hannah is in hibernation. The doctors does not want Hannah to be around anyone except Jon or I everyone else has to stay away until her counts come up.

Jon donated platelets for Hannah yesterday. She needed platelets today and received Jon's! What a wonderful feeling to know that he was able to help her.

Hannah's counts should be on the rise any day now. She has had 5 Neupogen shots. Hopefully they will kick in soon. When Hannah's counts go up, her fever should go away, she can start to get off of all these antibiotics, and we should be able to go home.
As soon as Hannah's counts get up to 1000 and her platelets stay around 100 it will be time for her next monthly chemotherapy.

Thank you for all the prayers, concern, and all of the guest book entries. We appreciate all the support. Hannah is such a fighter and we are so proud of her.
Today Hannah turned 17 months old!

Keep the Faith!

11.14.2008

Written Nov 14, 2008

Yesterday, was a difficult day.

Hannah's platelets dropped again. If someone has a high fever the fever eats up the platelets per say! She needed a platelet and blood transfusion yesterday. The platelets never arrived but she did received the needed blood. Since, Hannah did not get the platelets she needed her platelet level dropped more. They are now below the so called thresh hold were she can start bleeding again. Hannah is going to have to have another head CT today to make sure the hemorrhage in her brain has not grown.
It is 8:50, 24 hours after the platelets were ordered, and Hannah is now receiving her platelets!

Hannah is still running a high fever. Yesterday it spiked to 104.2 and then went down after she received a dose of Tordal, to reset her internal temperature gauge. The fever stayed away for awhile. We thought it was gone for good. Then, around 4 am this morning her temperature spiked again up to 104.4! We gave her Tylenol and it has seemed to help. I just pray that these fevers stay away.

Now, for the icing on the cake!
(This is sarcasm might I add!)
Hannah had 3 "episodes" yesterday. She was having what I would say was seizures. The trunk of her body was rocking involuntary and arms and legs moving and her eyes when open were not focusing and rolling around. I requested an EEG, for them to look at the electricity in her brain to see if she is having seizures. Finally, after the third "episode" they knew I was serious and these episodes are not normal. Hannah will be having an EEG this morning in about an hour or so.

Hannah's TPN and lipids have been increased to run 24 hours, so she is getting IV nutrition continuously. She received her 3rd Neupogen shot yesterday and her ANC is in the 80's today! Her mouth sores look like they were improving yesterday but with the low platelets last night her mouth started bleeding again. Hannah's burn on her back is staying about the same but should start to improve soon as her counts increase.

"Dear friend, I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well." Third John 2

Please keep the prayers flowing.

Keep the Faith!