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 .
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
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!
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.
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."
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!
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
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.
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.
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."
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.
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.”
We are following God’s plan for us.
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
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
“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.
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.
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
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
"Do not withhold good from those who deserve it when it is in your power to act." Proverbs 3:27
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
I ask you...... Are you doing your part?
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!
***I also updated the blog with pictures form our September events...so go to the website and view the blog!
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.
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
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."
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
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!
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.
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
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.
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
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
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
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
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
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
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)
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
Let us remember the other kids who are going thru cancer and keep them in your thoughts and prayers.
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
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
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
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."
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."
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.
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.
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
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"
Thank you for all your continued prayers for Hannah.
Keep the Faith
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
"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."
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
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
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
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!
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
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
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."
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
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
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.
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
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
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
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.
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
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!
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
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